The crazy thing about how horrible my life is is unlike a number of patients I have been "lucky" to get clues, to get very abnormal bloodwork and diagnoses besides cfs alone, comorbidities, abnormal mris, access to surgeries that could help.
But does that mean that the doctors just help me and take care of everything and spearhead everything for me and I finally relax bc some things are figured out? No
I have to do so much research on etiology and on every possible experimental treatment available to me, and idk if I can even do it at this low point in my illness. I have to try and care for my state of mind, given my severity regular therapy isjt practical, even if it was , I havent found therapists to get this problem.
(And if u think the idea that we *could* do important stuff in etiology just as untrained citizen scientists is crazy, look at what patients did with the pace trial. They foiad the data and reanalyzed it themselves , they got very different results than the scientists who ran it got, who had been trying to keep the data secret, and it partially scientifically discredited a study that had been literally the main source for UK and US govt policy on me/cfs... a huge achievement.) Others have figured out through some scientific work how to biohacking aspects of their condition. Do I think its ideal to have to do this?NO!
Its insanely unfair. I'm typing this in pain, my neck tensing up, it's a cry for help, I cant sleep at 5 am and im.just looking at the etiology that I worked for years on and thinking about how fucking CLOSE the pieces are to coming together but my body and brain has nothing left in the tank to fit the rest of them together. This could solve more than just my illness but I can barely type, after I type this disorganized rant I will be crashing for all of tomorrow.
Nobody can help me with that. My youngest sister has taken more science than I have by far, and also has a healthy brain and access to professors and databases and , to reiterate, a healthy brain energy wise, which is a huge asset that allies dont understand how big a deal it can be. Like what takes me days could take her hours. But she basically doesnt seem to care enough about how badly I'm suffering to do anything about this. I shouldn't be venting on an account linked to my name about this but I dont have the energy to make a new one just to talk about this and maybe I'm beyond caring if she sees it. I have actually offered to pay her cash, decent amounts., for helping with the etiology, or giving her my nice film cameras (shes starting photography, and I cant do it since being sick) that are both sentimental and practical value, and worth a lot. Seemingly, the cash offers and the cameras aren't enough shes just too apathetic. I dont understand. When asking people I know with science backgrounds to help with the etiology I got a lot of nos but I assumed a family member, an immediate one, would be different. So instead of unclenching my neck or watching some movie with low volume and distracting myself I'm furiously typing, in pain that is inflicted by the only act of desperate communication and release I have.
I have given up a lot of things, well. Involuntarily , and voluntarily, I dont really have any pleasures anymore, have lost so much to the illness, all i have left is the believe that I can thread the needle and actually get remission despite the slim chances avg person with ME has.
I have clues , but they cant be put together bc the amount of organization and social capital to do that work quickly , is something I apparently dont have, not even with my own family. I would do anything to help my family member if the situation was reversed.
And yes, I've tried talking to her about it and it doesnt do anything, so I dont know. She did promise to help. But she has promised things before and didnt do them. She seems interested in social justice in terms of social media campaigns for things but not interested enough in disability justice to help with me and my illness. When I first worsened from housebound to almost bedbound, I had to move downstairs but she wouldn't let me have her room for a few months , which meant I had to crash myself going up and down the stairs to get things like food or water. I dont think she understands what my illness is. I'd rather believe that she doesnt understand than that she doesnt care.
My parents now care. They made lots of mistakes and earnes distrust early on, they did bad things and didnt initially believe me. But now they care and to an extent understand, but they are busy and overworked and cant just do the science , which isnt their background anyway, on top of their work. My other sister cares the most and has sacrificed everything to help me, but a single caregiver cant just take a ton of time on top of daily caregiving to do things like research. And she has adhd and mcas... we're both formally diagnosed and affected badly by mold . Probably everyone in my family is but we're the only ones not in denial about it
But my parents are running out of money to support me and I cant really get much from fundraising, which I need to buy time to stay near these doctors to figure out what's wrong. Even if I did, though, I cant see anything changing in terms of getting help to troubleshoot things like the etiology, which Is the most important thing I need help with.
Like everything scientific , it's a living document, and there were some things about it that were correct and prescient and some that need major updates. But I can barely write or type or think clearly. All I can do is complain I guess
It is utterly unfair that there are real things that are just out of reach that I cant access due to banalities like not having someone to help me with organizing and finishing this somewhat simple undergraduate level scientific document. Or not having someone to help me organize my dictated thoughts in general as I become too sick to type. Or not having enough home care. Even the occasional saline infusions would make things easier.
And having to organize everything between my doctors and etiology and do activist stuff (I havent been able to do much if any in person but have written lots of things and made videos as part of activist movements and publicizing ME to a general audience), and self care of any kind, and care for my traumatized soul ... and even consider making art about this experience on top of it ... god, how is it possible for someone with this disease to do all of that? It's so unfair, really. Not only are we abandoned in terms of research funding but when we try and figure things out ourselves and dig ourselves out of the hole we dont get help or a hand up from anyone , really, at least on the scale we need to recover. I wish one day I could wake up and just rest knowing that things were being taken care of by people around me .
I know this rant is disorganized and so on, and I know it may seem delusional thinking I could be close to a cure or figuring out the etiology or something but keep this in mind:
I have had access to surgeries that were for comorbidities of me/cfs that when treated often help the me/cfs and pots as well. I have had access to mcas treatment, I'm offered ivig for mcas and cvid and neuropathy.ive been diagnosed with neuropathy and pots and mcas and immune deficiencies and many treatable things and hereditary alpha tryptasemia, my tryptase and eosinophils and histamine and IgE are all consistently high, while total IgG is low and so is IgA, this is not a one time finding but rather a pattern, I have a history where I've improved, not total remission, but significant improvement, in good air, over and over again , I have enough response to things affecting NMDA and gaba to infer my glutamate is high in my brain, as it is in many me/cfs patients ... i have taken supplements that help pyruvate dehydrogenase with some success , saline to help blood volume has helped immensely short term... i am sure I'm leaving some stuff out bc there have been a lot of findings that were not standard. I am sure that I have enough clues to piece this bullshit together if I had time, money and HELP...
I know a lot of patients aren't lucky enough to have any clues or any abnormal lab tests but for me its almost torture to have clues but not be able to act on them. It really fucking sucks. It's like the greek myth of tantalus. I stay up tonight after taking heavy sleeping pills (guanfacine, nothing addictive, but still should knock me out) just begging ... god... maybe , anyone... to help me with this.
I dont feel lucky. I'm severely ill, I dont even have mold free housing , am in severe pain, am unable to listen to music as a former musician, my body continues to fall apart in novel ways that surprise and scare me, and trying to hold onto hope that I can get better is taking so much effort its destroying me. But after what I've seen about the patterns and testable and treatable not-so-mysterious parts of my illness how can I just relax and not think about it?
In short its unfair I have to carry this burden. And I wish there were allies that could organize extensive and aggressive protests at the NIH, and help more with care , and with things like etiological research, even "amateur" research.
I would happily deal with the loneliness and current loss of my youth and everything if I had an actual tangible plan and help to carry it out, to get better ,even if it will take years. But no... I cant even have this.
This probably seems like whining to some of you, maybe it doesnt. Maybe it sounds like something that resonates. I will say this. I have totally identified with that type of romantic "raging against the dying of the light" thing , like [Dylan thomas ](
)... I dont want to just wait this illness out peacefully.
And I cant pace really. I can here or there, but I have too much on my plate. I know that nobody else will do a lot of these things, I would rest and pace if someone else would , but I cant. Even if they were doing them at a slow but determined pace.
I feel terribly lonely about this. It's a loneliness worse than any lack of friends or romantic partners that is part and parcel of some of the fallout of this illness. It's the feeling that I'm alone in a doomed fight, that the noise of the world drowns out anything I could say in my strained, soft voice that has been weakened by illness. Like I have become a ghost... sometimes I think about how nearly everyone moved on with their lives in the social circles I had and it scares me more than it saddens me. I just disappeared. I feel as though I could go up to them and wave my hand in front of them and yell and try and get attention and they woulsnt see me, you know like happens in twilight zone episodes or horror movies? I sometimes go on social media and try and virtually shout like that but I dont get any response.
This burden is far too heavy for me , bc I am as light and insubstantial as air, and it is basically the weight of a whole world.
