Hey AriFollow

What's goin' on?

I don't, really.

Wow! Catt is still alive!
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She's so cute. Not just because of the accent but she has this soft feminine voice that's soothing to listen to.

Also, you'd get to hear her all the time if you hadn't abandoned us, Catt. :/

Don't you have to take a nap or something?

This is the worst Skype thread ever.

No, whatever Skype thread I'm looking at right now on Skype is the worst Skype thread ever. I don't recognize the names of anyone who's chatting, but I see Kirby and Pensive up in the "In chat, but offline" section.

What kind of game is Wint?

Oh Cattattack. Oh thankyou Niobia, Kirby, Ash.

I've mostly been in bed reading, or back here in the forum where I can move at my own glacial speed.

My physical condition hasn't been very good. My fingers/thumbs shake, and spasm. Not all the hours of the day, but often enough to interfere with me playing the game to a high enough standard to please me. My mouse careens all over the screen, I sometimes misselect spells because I tell one finger to move and a different one moves instead. It makes me depressed. It also makes me depressed I can't physically sit up to the computer for the length of time I want to, very often the last 2 and a half months. I spent a month and a half going to hospital, having more tests done, because my memory is also deteriorating more.

Just travelling back and forth in taxis and moving within a hospital building, lying around having tests done, waiting in chairs, sitting up for interviews, knocked the stuffing out of me worse for more than a month after. I've been able to do less than normal, walk within the house less than normal, get out of bed less than normal. My overall mood has been lower, as often happens when I'm drained more. I've even become less compliant taking my daily pills because even that simple task seems just TOO MUCH. I'm sick of it, I'm sick of them, I'm having more frequent episodes of pessimistic thoughts about being this ill, this ill today and all my yesterdays for more than half of my life.

There are strong indications my skin and gut isn't absorbing what I eat and take enough. I've been put on more pills, a super high dose of vitamin D3, and told to have my D level measured in a couple months. Apparently my D3 level is on the floor, despite me already taking supplements of it because it's necessary for immune health. Next step is direct infusion (suffusion?) of vitamin D into my bones via needle.

My doctors are sympathetic, but all they can do is hald out the hope that one day, there may be a treatment in my lifetime. I have to go back for more results coming in, I have to pick up more meds. In MARCH I already hit the $1000 safety net of personal co-payments to doctors, which I used to hit more usually in October or November. My last med pick-up cost $80, which means it cost taxpayers $800. I don't want to work out how much the taxpayers spent on me Jan-March for the public refunded doctors and specialists. And half my visits were actually to a private hospital and private health specialists on my Private Health Insurance, so I cost them a butt-load too. My partner pays a butt load in tax, but I never pictured, when I was a teenager, being a financial burden all my adult life.

I had plans, ideas of jobs, I wanted a career, to buy my own house, to work with an architect to design something beautiful, healthy, energy efficient and slightly overengineered so it had a good chance of standing 3 to 500 years later, taking into account that later generations could be significantly taller or bigger. I had plans for a habitat garden, a small kitchen garden, a big fresh herb garden, a roof garden that would not reflect so much heat back into the atmosphere. I had ethical investment plans. If I got enough together, I wanted to become a house developer, selling off more sco-friendly, comfort living houses.

I adored the bush, the snow, night-clubs so much. I miss dancing, skiing, rain-forest air so much I have a black bottomless pit of missing inside me. I miss kissing, I miss sex. I miss helping my mother and family around the house when I visit. I cringe with the mostly stifled resentment my mother feels that I can't help her when she is sick and beyond tired herself. I miss my friends who I have let drift away, half of which is because all of them, ALL of them, don't understand my verbal explanations of my illness, won't take the time to read a couple of page medical printout about my illness, can't understand why eating better and exercising more, and just PUSHING myself won't get me better. ("I know you don't feel up to it, but if you just push, and keep PUSHING, you'll eventually feel better.")

I can't get them to understand that not only do my mitochondria not work properly, they actually fracture and break within my cells if I push myself physically beyond my meagre limits. If more mitochondria fracture, I am permanently worse. That there is a 10% death rate from my illness. That I could stroke out from my clotty blood, have a heart attack from either my faultily driven left heart valve or my clotty blood, that driving my DNA to more fracturing makes me more and more cancer prone. That because I am not one of the people who have not spontaneously recovered within the space of 3 years to somewhat normal (if they are very careful of themselves) that I am more likely to end up in a hospital bed with a feeding tube down my nose, unable to bear any light or sound in the room, unable to roll myself or bear the sensation of sheets on my skin.

Bah, I've had this pity party on these boards before. In the Asylum, I think. I shall continue wailing in the small interests of education, given this has turned into tl:dr. The old name was Myalgic Encephalomylitis, which means Painful Swollen Membranes. (Membranes throughout the whole body, especially of the internal organs/brain) Swollen internal organs meaning of course that they cannot function properly. The entire body is compromised. The new name is, god help us with it, Chronic Fatigue Syndrome, which gives laypeople the idea that eating better and exercising more, and going to bed earlier, is going to fix it all up! Palliative care doctors have determined that patients with ME/CFS have more pain and debilitation, and less quality of life, along the course of their illness as they degenerate, as people with fatal cancers or AIDs, or any other illness. More people have ME/CFS than MS, and yet there is next to no medical research funding for it compared to less prevalent illnesses.

It is a virus, it is communicable during the incubation phase, it goes around in epidemics, and yet it has been shuffled into the too hard basket, the hypochondriac basket, the basket of specialists who find biophysical processes of the illness and treatments and then out of sheer horrified pity for their present patients press ahead with treatments instead of holding back and doing long term controlled studies that would get the research knowledge and proven treatments INTO THE WIDER SYSTEM.

****. I've been in bed reading. I miss you guys. I don't want to talk to people, I want to curl up alone and protect myself by falling into my drug of choice, obsessively, compulsively, focussed reading. Obsessively reloading forum pages hoping for new posts. Obsessively watching TV episodes and films back to back until I fall into comatose sleep. I set my alarms because I lose the days of the week, the weeks of the month. I think of you all sometimes. I want to hear your voices. I want to play with you. I don't want to initiate contact. I don't want to press "PLAY". I've mostly been happy reading. Except for the times I haven't been able to avoid tearing physical suffering. Except for feeling ripped off by life until I wait those thoughts out.

This, pretty much.
I wish I could find the right words but for now this'll do.


/hug Ari

<3

Edited, Apr 7th 2011 9:09am by Belkira

/cry

I love you guys too.


EDIT: oh, I gave you all a rateup in appreciation, but Aethien didn't tick over to Excellent. Looks like you have to inform or amuse more people, Aeth.

/watery smile

Edited, Apr 7th 2011 10:26am by Aripyanfar