PisForPerseverance
Senior Member
- Messages
- 253
Let me clarify. What I said is about my life, and isn't an endorsement, and isn't about psychological damage from mecfs only. I meant my life in general pre and post. Nor do I mean that our suffering has value, when I say reclaiming my value. I mean reclaiming my value as a human being. I asked about critical theory because you mentioned faucoult in your podcast description. I understand being offended by the notion of "oh I'm healed from psychological damage from living with mecfs because I have made sense of the larger forces that create that psychological damage", with maybe the indirect implication that others can too. I am NOT healed psychologically from living with mecfs, that would be impossible since I'm still living with it. And understanding alone doesn't remove harm while it's happening, or necessarily heal it from a past harm. But it is true that I have been healing *some* of the psychological damage specific to mecfs from past years, and that I can better cope with ongoing psychological damage from what it's like to live with this disease, because of therapy. Contextualisation has been one tool I've used in psychological healing. This is a principle in trauma therapy/regular therapy that my therapist brought into my life partially and that I also was prone to do before I started working with her. Healing from the things I'm healing from, from many years pre and then post mecfs, is a long ordeal, and is not simple. I don't want to give the impression that anything about this disease is easy work especially when there's a lot of previous severe life experiences too. I think taking a college class may sound like I'm better than I am. I mean.. taking college classes doesn't mean someone isn't suffering a lot, but I happen to only have started school again this year due to cognitive improvements and only two light load virtual classes. So.. yeah. Just felt the need to put that in. I think we probably just want to be seen for our suffering and don't want people to think we're better than we are.
I didn't study Critical Theory formally or informally except some critical psychology, which is critiques on western psychology academically and in counseling and psychiatric practice, and suggestions to do better. So I don't actually know who many of those people are, but I get some of the references a little bit. I hate Freud from what I know. I studied sociology in school years ago. Contextualising my experience the way I do it is really any context I become aware of. Cultural, subcultural, ecological, community, environmental, financial, historical, familial, political, cross-cultural, what have you. And the more recent awareness that all of that impacts my experience which impacts my genetics and what's happening in my biology, has been powerful as well. That's interesting about the philosophy of science. I haven't read any but I want to.
Anything is useful only to the extent that there is actual benefit. I agree with you completely. Understanding or learning things that have no positive effect on ones life, that don't bring any enrichment internally or tangible practical benefit, have no purpose. Well, ok, maybe that's too broad, but if we're talking about what's most useful in a life, I think that's true. One of the main therapies in my therapy in somatic therapy, so I've become really attuned to what's happening on a sensation level and can recognize whether something has real tangible benefit for comfort in my body/life/relief of suffering/improvement in quality of life. Contextualizing isn't just theoretical exercise and has had various downstream psychological and practical effects in my life.
I do think understanding where harms are coming from is necessary to organize but yeah one doesn't need to go deep with that in order to make change or try. Just identifying where they're coming from on a basic level to have some avenue of action to take. Higher level theory is not necessary. That wouldn't be realistic anyway. But I do think that to the extent that the most root causes or biggest players can be identified can help groups know where to focus their efforts. But people go to school for those things and are good in leadership roles. I think mecfs haven't organized like act up because with aids they weren't so ill unless they were already dying is that right? There seems to be growing efforts now.
I understand wishing you had learned other things. I agree about preventable things that aren't being changed, I feel the same about environmental toxins. I do see environmental toxins as a societal context though. It's large scale and it's particular to time/place as to when it started and why it's proliferating.
I don't have much of a reference for you because I only listened to snippets so I don't know much of your journey or how you're doing now but I'm really sorry to hear you're getting severe and that your life feels completely miserable right now. I can't imagine what severe is like and I'm sorry. Your loss of music sounds profound and I hope you are able to recover it or discover alternative comforts in the meantime and that you are able to heal in general. I have trouble with music too. Have you been on a Lyme board as well? Your username used to be debored right? I read pr only occasionally in the past but your comments stood out to me for some reason I don't remember. My illness has involved mold and Lyme as well. I think we are probably around the same age. I understand missing years of youth, it's devastating. Is it peptides that your plan is that you can't afford? I think I remember you saying you were trying to get a cci surgery and haven't been able to? In the spirit of tangible help, if this applies to you. If you're interested in doctors that treat eds and spinal instability with ultrasound guided prolotherapy/prp, I'll give you all the legwork I've found on doctors and comparing them so far and maybe you'd find a way to get financial assistance somehow for it. (This is not the Colorado clinic and that invasive procedure. Spinal injections are more common than I thought, I've come to understand. It's more done by those with eds. I happen to have an eds specialist in my city who does this and who my pt says his patients have reported good results)
I didn't study Critical Theory formally or informally except some critical psychology, which is critiques on western psychology academically and in counseling and psychiatric practice, and suggestions to do better. So I don't actually know who many of those people are, but I get some of the references a little bit. I hate Freud from what I know. I studied sociology in school years ago. Contextualising my experience the way I do it is really any context I become aware of. Cultural, subcultural, ecological, community, environmental, financial, historical, familial, political, cross-cultural, what have you. And the more recent awareness that all of that impacts my experience which impacts my genetics and what's happening in my biology, has been powerful as well. That's interesting about the philosophy of science. I haven't read any but I want to.
Anything is useful only to the extent that there is actual benefit. I agree with you completely. Understanding or learning things that have no positive effect on ones life, that don't bring any enrichment internally or tangible practical benefit, have no purpose. Well, ok, maybe that's too broad, but if we're talking about what's most useful in a life, I think that's true. One of the main therapies in my therapy in somatic therapy, so I've become really attuned to what's happening on a sensation level and can recognize whether something has real tangible benefit for comfort in my body/life/relief of suffering/improvement in quality of life. Contextualizing isn't just theoretical exercise and has had various downstream psychological and practical effects in my life.
I do think understanding where harms are coming from is necessary to organize but yeah one doesn't need to go deep with that in order to make change or try. Just identifying where they're coming from on a basic level to have some avenue of action to take. Higher level theory is not necessary. That wouldn't be realistic anyway. But I do think that to the extent that the most root causes or biggest players can be identified can help groups know where to focus their efforts. But people go to school for those things and are good in leadership roles. I think mecfs haven't organized like act up because with aids they weren't so ill unless they were already dying is that right? There seems to be growing efforts now.
I understand wishing you had learned other things. I agree about preventable things that aren't being changed, I feel the same about environmental toxins. I do see environmental toxins as a societal context though. It's large scale and it's particular to time/place as to when it started and why it's proliferating.
I don't have much of a reference for you because I only listened to snippets so I don't know much of your journey or how you're doing now but I'm really sorry to hear you're getting severe and that your life feels completely miserable right now. I can't imagine what severe is like and I'm sorry. Your loss of music sounds profound and I hope you are able to recover it or discover alternative comforts in the meantime and that you are able to heal in general. I have trouble with music too. Have you been on a Lyme board as well? Your username used to be debored right? I read pr only occasionally in the past but your comments stood out to me for some reason I don't remember. My illness has involved mold and Lyme as well. I think we are probably around the same age. I understand missing years of youth, it's devastating. Is it peptides that your plan is that you can't afford? I think I remember you saying you were trying to get a cci surgery and haven't been able to? In the spirit of tangible help, if this applies to you. If you're interested in doctors that treat eds and spinal instability with ultrasound guided prolotherapy/prp, I'll give you all the legwork I've found on doctors and comparing them so far and maybe you'd find a way to get financial assistance somehow for it. (This is not the Colorado clinic and that invasive procedure. Spinal injections are more common than I thought, I've come to understand. It's more done by those with eds. I happen to have an eds specialist in my city who does this and who my pt says his patients have reported good results)
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