Slight-Moderate-Severe-: How do we decide where we fit?
It has always confused me, trying to understand, how to describe the severity and level of symptoms. I usually explain the illness as chronic and debilitating in general. On a daily basis within the home, I use a colour system to identify my level of symptoms and hence my ability to function. Everyone knows the drill and what to do when the red card is up. It's just easier to not have to describe every time the exhaustion, level of pain, discomfort and ability I have. The red card identifies severe and can be up for days and everyone looks forward to the yellow card and then the green. The green card means I can get out of bed and attempt some activity under supervision; so is green slight? slight chronic ? Sometimes all three cards can appear during the day. How would you describe a good day? I haven't got a card for when the illness is extreme and dangerous: I have fallen unconscious with body shut down and hospitalised. Knowing where you are on a sliding scale that is uniform and universal would be a great help in communicating the level of severity. Any thoughts!
@crashdummy I agree this is very hard and I wish there was an objective measure that takes into account the variability that can occur even within a single day or hour. I feel like I can only describe the severity of my illness on a case by case basis, not the average severity overall.
I've had weeks where I've been almost completely bedbound (used to be rare, now increasingly common), and weeks where I've been able to function almost at full pre-illness capacity (these are increasingly rare), and weeks where I can function at between 2-20% of pre-illness capacity (most common). I calculated that percentage from the number of hours I can work now compared to before I got sick, but of course there's a lot more to life than work. At one point I could work full time but do absolutely nothing else; and sometimes I might be able to do some basic self care or personal admin, but not work. So it's not really indicative of function compared to a healthy person.
And things can get complicated.
Is a "bad day" one where you feel ok-ish but based on your vital signs, you know that doing anything today will make you crash?
Is a "bad day" one where you don't have too much fatigue, but are so nauseous you can't eat, which eventually results in a different kind of fatigue because your blood sugar drops?
Or is a "bad day" only the kind where you are so exhausted you can't lift your head?
@river Hence my confusion. You've hit the nail on the head.
RatsAreFluffy last edited by RatsAreFluffy
A difficult question. I’ve never felt like I can call the symptoms I have extremely severe, because I feel as though it diminishes and disrespects the people who have had it worse than me. But at the same time calling it moderate downplays my own symptoms, because for me, they were severe.
We all experience things differently, and have different tolerances. It is all a case-by-case basis. And have you ever had, this “Describe the pain on a scale of 1 -10,” test? Live with a small amount of pain in the background all day every day for too long and you forget what it’s like to be without it.
@RatsAreFluffy I agree. It has so many variances and trying to explain this especially to a doctor is frustrating. Maybe I'll just carry the red card with me everywhere. I've been asked so many times 'slight moderate or severe' …
Good thread Crash, and a tricky one for sure. Lots of great replies above that recognise the difficulties in measuring the level of incapacity. I like your colour-coded system
One thing I'll say as a (mild-to-moderate) moderator is that it's important to recognise that while there are more and less severe levels of ME/CFS, there is no "easy" option, and it's important we respect and support people on all levels of the spectrum. Ie, people with ME/CFS should feel comfortable sharing their experiences, success and challenges, whether they're "mild", severe or anywhere in-between.
There have been numerous attempts to codify a scale - and it doesn't help that they're often inconsistent. I've seen some half-decent ones, but try as I might, I can't find them online tonight (brain fog doing what it does best).
I think that what makes a good day or bad day varies tremendously between individuals, depending on their baseline level of severity. For some ppl, a good day might be a day when they're well enough to catch up with a friend. For those who are more severe, it might be the ability to get out of bed for a short while, have a shower, brush their teeth or even just change into clean clothes. That said, any of those activities can cause PEM, turning a good day into a shit one!
In general terms, 'severe' patients are defined as bedbound or housebound - but I find this distinction between moderate and severe quite simplistic. I can leave home twice a week if necessary for appointments etc, but I cop terrible PEM which makes me sick for several days. And when I'm home, I spend the majority of time lying down. I may have more capabilities than many PWME - but given the extent of my PEM, I'm not sure that I'm much healthier than someone who's fully housebound.
@RatsAreFluffy I agree with your thoughts on comparing yourself to others more severe. I feel the same way. When I'm bedbound in a three week crash, there's no doubt that I'd say I'm in the severe category, but what about the in between times when I'm out of bed, but still housebound but I can potter around the house and do some simple things? Am I still severe or do I drop down to moderate? It's a tricky thing, and with the nature of it, I don't think I'm in the same category everyday.
I wonder if other diseases are categorised in the same way? Can you have mild/moderate/severe MS or Parkinsons? Or is it that you either do or don't have the disease and those that have it then for some people they have better functioning than others with the same disease?