Still mid-way through my photo project about Myalgic Encephalomyelitis - aka ME/CFS, ME or Chronic Fatigue Syndrome. I hope these mini series are enjoyable.
I'd welcome your feedback on these and indeed any/all of my images, as I no longer see them with fresh eyes. It's really helpful to hear how they are coming over! Thanks in advance :)
30 years of ME here too, your photos do sum up ME, the blurry window is a good representation of brain fog! I'm swimming in brain fog at the moment!! Love the greenery through the window.
Really great feedback, thank you so much! Yes the burry window looks onto the park, where I used to be able to walk the dog, but haven't for three or so years now. Sorry to hear the fog is swirling atm, hope it lifts!
The images are great, as is the post. Really well collated. I’m not sure I believe in a cure. I have no trust in our healthcare system who has no interest in such complex illness such as CFS/ME or migraine disease.
The research I’ve done on migraine has always been there so I don’t believe more money invested in research will generate beyond that which we already know. It’s just for some reason we’ve chosen not to educate on it. Look the other way. (Though I am grateful for where interests in our healthcare service are invested though. I feel strongly we’d fare better to understand that the healthcare system is there for our survival, to save lives. It’s not there to help us create health.)
When I come across others in the community who are recovering and generally doing a lot better than they were, they almost always have a multi-disciplinary team. Not particularly medical though they can be if you’re fortunate to get a functional doctor.
An integrative approach is the only way i can see forward. But of course, that is only afforded by a lot of privilege and making some really tough decisions.
A community of space holders is what I’ve established around me and how I term mine. But whatever we call it, there’s a team of professionals. Weighty support. United and fully supportive of my efforts to get well. And it’s utterly essential. Or has been to me in any case.
These are eye-opening, Andrew - especially with your commentary and personal experience in between each one. I too am very much looking forward to summer being over. It is now my least favorite season. I’m more shut in during summer than winter thanks to this terrible heat intolerance. I’ve had to sleep-divorce my husband for the summer too because while we are fortunate to have air conditioning, it just doesn’t cool the main bedroom enough. As you say, sleep deprivation is one of the worst things with ME and Long COVID.
As a fellow ME sufferer, who came this way from Long Covid, I can relate. Lost my career and much more to this. I’m trying to get back to doing artwork myself and applaud your efforts.
Hey Simrit, thank you so much for the comment. Sorry to hear the impact ME and LC have had. I too can relate to this, I've been forced to liquidate by biz of 10 years just this week. ME is an insidious thief in so many respects. It can bring about/uncover some positives, but for me these have so far paled into significance compared with what I've lost. Nice on on the aspiration of finding a little creativity. I hope you get there and that it helps! :)
I'd welcome your feedback on these and indeed any/all of my images, as I no longer see them with fresh eyes. It's really helpful to hear how they are coming over! Thanks in advance :)
30 years of ME here too, your photos do sum up ME, the blurry window is a good representation of brain fog! I'm swimming in brain fog at the moment!! Love the greenery through the window.
Really great feedback, thank you so much! Yes the burry window looks onto the park, where I used to be able to walk the dog, but haven't for three or so years now. Sorry to hear the fog is swirling atm, hope it lifts!
Thank you! I wish you future dog walks however far off they might seem sometimes!
The images are great, as is the post. Really well collated. I’m not sure I believe in a cure. I have no trust in our healthcare system who has no interest in such complex illness such as CFS/ME or migraine disease.
The research I’ve done on migraine has always been there so I don’t believe more money invested in research will generate beyond that which we already know. It’s just for some reason we’ve chosen not to educate on it. Look the other way. (Though I am grateful for where interests in our healthcare service are invested though. I feel strongly we’d fare better to understand that the healthcare system is there for our survival, to save lives. It’s not there to help us create health.)
When I come across others in the community who are recovering and generally doing a lot better than they were, they almost always have a multi-disciplinary team. Not particularly medical though they can be if you’re fortunate to get a functional doctor.
An integrative approach is the only way i can see forward. But of course, that is only afforded by a lot of privilege and making some really tough decisions.
A community of space holders is what I’ve established around me and how I term mine. But whatever we call it, there’s a team of professionals. Weighty support. United and fully supportive of my efforts to get well. And it’s utterly essential. Or has been to me in any case.
These are eye-opening, Andrew - especially with your commentary and personal experience in between each one. I too am very much looking forward to summer being over. It is now my least favorite season. I’m more shut in during summer than winter thanks to this terrible heat intolerance. I’ve had to sleep-divorce my husband for the summer too because while we are fortunate to have air conditioning, it just doesn’t cool the main bedroom enough. As you say, sleep deprivation is one of the worst things with ME and Long COVID.
As a fellow ME sufferer, who came this way from Long Covid, I can relate. Lost my career and much more to this. I’m trying to get back to doing artwork myself and applaud your efforts.
Hey Simrit, thank you so much for the comment. Sorry to hear the impact ME and LC have had. I too can relate to this, I've been forced to liquidate by biz of 10 years just this week. ME is an insidious thief in so many respects. It can bring about/uncover some positives, but for me these have so far paled into significance compared with what I've lost. Nice on on the aspiration of finding a little creativity. I hope you get there and that it helps! :)