Despair

[Quilp]

And we still don't know......''mystery illness, controversial, more funding needed, further works needs to be done, small samples sizes''

I have heard all this before and so many times. I honestly don't believe that any of us will be ever find out what causes our illness. My only hope is that we find a drug, even by accident that works, even though we don't know why.

I am really really unhappy, barely willing to talk to anyone. If someone told me on October 8th 2009 that in 2022 I wouldn't have anything to help I wouldn't have believed them. You reach a point, some staging post called desperation - then you go further into another place that doesn't even have a name.

How obscenely unlucky for anyone to have caught this illness. How desperately unlucky that we wake up each morning with suffering by our side.

Please, please, just once, let us hear of something wonderful. Let us find what Maureen Hanson calls ''the hidden treasure''

Please, give me that at least before I die. How many of all those that doubted us could then look us in the eye.

 

[YippeeKi YOW !!]

I honestly don't believe that any of us will be ever find out what causes our illness. My only hope is that we find a drug, even by accident that works, even though we don't know why.

"By accident" is the operating phrase here.

A lot of us have discovered things that help, with no reasonable understanding of why they do (@Wishful and his cumin, me and my assortment of minerals esp mag gly, others and mini doses of Abilify or Modafinil, etc etc etc), but speaking for myself, who the fluck cares ..... after over a decade of this swirling little sucking sinkhole of an illness, I'll take what I can get.

And I think we can pretty much all agree that that's pretty much all we have right now: our willingness to be our own lab rats and Petrie dishes, and trialing and experimenting to find something that gives us that 10% or 15% or 20% that'll keep us going til maybe, MAYBE, someone makes a break-thru of some kind and some sort of real healp appears ....

How obscenely unlucky for anyone to have caught this illness.

I dont think this is something we catch, beyond the first lurker EBV infection, if you fall into that rather large subset.

I think that it's soooooooo complex and intersticed with other crap, like your genetic inheritance, your microbiome, your delicately balanced endocrine system, the state and quality of you immune system, how well your neurotransmitters signal and receive, your gut health .... it gets dizzying.

I am really really unhappy, barely willing to talk to anyone.

I cant tell you how much I empathize with you ..... I've been in a state of wheels-coming-off and a combination of sort of despair, hoplessness, ad a sense that soe part of me has come untethered from the rest. I'm really flailing right now.

So DO know that you're not alone @Quilp .... and also that, at least in my experience, eventually this will end and I'll crawl back to wherever I was when this miasmic cloud of swamp gas and misery settled on me .... and hopefully, you will too .....

Don't give up, don't give out, don't give in ....

 

[YippeeKi YOW !!]

Let us find what Maureen Hanson calls ''the hidden treasure''

PS .... unfortunately, the 'hidden treasure' is always either within our own selves, or inside the cave guarded by a large fire breathing dragon, with no sense of humor. Take your pick ....

 

[maybe some day]

@Quilp, truly spoken.