Woman 'with ME' won world kickboxing championship

[rainy]

@Hutan Thank you so much for that post.

I set some of my best times in swimming competitions a year or two after I got ill, even catching up to some of my healthy team mates at events they had always been better than me at.

I guess my ME would be considered mild at the time, but my burden of symptoms at the time was in many ways a lot worse than now that I’m more severe. Back then I was more or less always in a state of extreme overexertion and PEM, and it was hell. But I would sort of bounce back again - push myself, spend two days in bed, then push myself again.

Over time I gradually bounced back less and less, I get PEM from minuscule things now compared to back then, and I don’t really bounce back at all any more. Any big crash seems permanent now.

I have always been affected more cognitively than physically. I went from being really good at math, to not able to hold a number in my head. In the early years of being ill I think I would get worse PEM from forcing myself to do math for an hour, than running for an hour.

Even with PEM from physical activity it’s my cognitive symptoms that take the biggest hit.

When I first got ill I found two hours of swim practice more managable to get through than a school day (even though I didn’t recover from swim practice like I used to). When I got so ill I had to quit school completely, I still did an hour of exercise almost every day, sadly trying to get cured by exercise. I had no social life, struggled to read or to think at all, spendt almost all my time in bed except for that hour I exercised. At that point I was probably still doing more vigorous exercise than everyone in my family, but I was very ill.

ME is very confusing to me. In the first years I was doing quite vigorous exercise some days, and other days I couldn’t open a milk carton. Like my body was still strong, but I couldn’t access the strenght.

Sorry for such a long disorganized post. Just wanted to say that there’s many different experiences with ME, and that being able to exercise (maybe with a great cost that other people won’t see) doesn’t mean that someone doesn’t have ME.

 

[Midnattsol]

@Hutan Thank you so much for that post.

I set some of my best times in swimming competitions a year or two after I got ill, even catching up to some of my healthy team mates at events they had always been better than me at.

I guess my ME would be considered mild at the time, but my burden of symptoms at the time was in many ways a lot worse than now that I’m more severe. Back then I was more or less always in a state of extreme overexertion and PEM, and it was hell. But I would sort of bounce back again - push myself, spend two days in bed, then push myself again.

Over time I gradually bounced back less and less, I get PEM from minescule things now compared to back then, and I don’t really bounce back at all any more. Any big crash seems permanent now.

I have always been affected more cognitively than physically. I went from being really good at math, to not able to hold a number in my head. In the early years of being ill I think I would get worse PEM from forcing myself to do math for an hour, than running for an hour.

Even with PEM from physical activity it’s my cognitive symptoms that take the biggest hit.

When I first got ill I found two hours of swim practice more managable to get through than a school day (even though I didn’t recover from swim practice like I used to). When I got so ill I had to quit school completely, I still did an hour of exercise almost every day, sadly trying to get cured by exercise. I had no social life, struggled to read or to think at all, spendt almost all my time in bed except for that hour I exercised. At that point I was probably still doing more vigorous exercise than everyone in my family, but I was very ill.

ME is very confusing to me. In the first years I was doing quite vigorous exercise some days, and other days I couldn’t open a milk carton. Like my body was still strong, but I couldn’t access the strenght.

Sorry for such a long disorganized post. Just wanted to say that there’s many different experiences with ME, and that being able to exercise (maybe with a great cost that other people won’t see) doesn’t mean that someone doesn’t have ME.

Very similar to me. Although my cognitive issues have improved while my phyiscal capabilities has declined.

 

[Invisible Woman]

I don't quite know what to make of it.

On the one hand Ruqsana does us no favours in that others look at her then look at someone like me and want to know why I can't achieve something at as high a level as she can.

That's not her fault though. That's society's blinkered view of sickness and disability. Like during the Paralympics and hearing people say ,look what they can do ,now the others need to get off their metaphorical arses and off benefits. My answer to that was where's your Olympic medal then? You're not sick or disabled so if other healthy people can win a medal why can't you?

I reckon whether at the mild end of the spectrum or the most severe most of us give it everything we've got. Someone more mildly ill than me might be able to hold down a job but that doesn't mean they aren't struggling just as much as I am or that I'm not putting just as much effort in. It's just were at different levels of function.

I guess I just wish that those who do achieve more and who are more visible at least give a nod to the fact they aren't necessarily a typical example of a patient with ME. If they're going to mention ME or advocate in any way that they are aware of the more extreme levels of ill health. Having said that even if they did mention the more severely ill there's always the possibility it would be edited out.