u/ocean_flow_

Hey everyone

I have been invited to speak at the australian long covid conference this year to talk about my experience. Im going to focus my speech on severe long covid and severe mecfs because I feel many researchers do not understand enough about it. Im focusing on how disabling long covid can be, how research is still continuing to psychologicalise our condition which is harming us and the need for better quality research so australian doctors and policy (eg; access to ndis) can change.

Love to hear peoples thoughts. I dont wanna feel like im leaving my scope of talking about lived experience but I have an opportunity to advocate to researchers and I want to use it.

I've been severe for a few months since I went to the beach while in rolling PEM. Most tasks i can tolerate daily is feeding myself and my cats, shower every 3 days, play with my kitties, and occasionally like clean my kitchen bench or fold some clothes and some light TV at night and audiobook during the day. Mostly, i'm lying on the couch or bed, just too tired to do anything.

I'm losing my mind. I'm super suicidal. I used to smoke weed to cope, but that's been disrupting my sleep. I need to forget myself. I can't cope with knowing how i've lost my career and everything. I've been looking into MAID but people still want me to live and i've been sick for barely 13 months so told to give it more time. But i literally don't know how to pass the time without going mad? I don't know how to keep passing the time and staying safe? on top of this going through benzo withdrawals. The only coping strategy i have ATM to stay alive and get through the day is take a norflex to sedate myself. Or clonidine. i swap them over. but misusing meds doesn't seem good. But like....what else can I do? can't numb myself with TV. Can't go for a walk. Can't cook. Can't read. Meds are the only activity i can do. And the other option is self-harm. The other night i took my cat for a walk, an activity i loved doing when moderate but can no longer do. I paid hard. but my choices were to pass the time and not go insane and suicide was; take norflex, self-harm or walk my cat.

What other strategies do severe people do?

Germany recognised mecfs as a serious medical illness at an international scale and pledged all this money for funding. I have heard that Cher put herself into remission from mecfs by getting treatment in germany. And listened to a podcast of a doctor who lived in the UK whos daughter got long covid mecfs and she flew her to Germany 5 times for treatment and she made a full recovery. They all say Germany can run blood tests other countries cant and atm im trying to organise sending my bloods from.australia go cell trend for testing.

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Yet I read Germans here on reddit suffering as much as everyone else?. I keep thinking if I could get out of severe build my baseline id go to Germany find the best specialist and get treated like all the other success stories ive heard. Why arent Germany citizens doing that? Im not rich i have assets i can sell but id crowd fund the money if I had to whatever it took to get that treatment.

I play a bit of piano and previously the violin in an orchestra. Learning an instrument and to cite read music is hard. But it also requires learning the basics of the alphabet (learning musical notes, the letters, what they sound like and where they correlate on your musical piece qnd how to read it on sheet music". I cant imagine learning this skill without knowing how to read? Requires a lot of cognitive thinking and processing speed basics of reading.

TW: suicidal ideation

Im severe end of moderate borderlining severe. I had a severe crash that lowered my baseline. I started off mild end of moderate when I first got sick June last year. I probably have about 7.5hrs out of bed a day. Im suicidal and have plans of either ending it all or seeking maid in one to two years time if I dont improve. The only thing that keeps me going besides my cats is telling myself people worse off then me like severe and very severe continue to live so so can I. But that's getting harder and harder to sustain my will to live. I want to at least make it one more year before making such a permenant decision.

Can severe and very severe people share what keeps you going? Anyone suicidal and still surviving and if so can share your reasons? It may help me. Im hoping midocure comes out in the next ten years. Atm that's the onky other source of hope i have. I used to think I could improve but im hopeless now :(

Tldr; want to know how to keep going.

Is aunt lydia going to do something or are they suggesting daisy might?

Im in an mecfs support group run by our mecfs organisation. We are all 2 yearly newly diagnosed. I have been sick the least (11months) others around 2 years some 5. I was shocked at the rates of improvement. One girl whos been sick for a bit over two years has made these insane rapid improvements. Mind she was always mild, never reached the severity some of us get. She went on a 4 day hike carrying an 18kg backpack no pem! No crashing!

Another girl said she was crashing weekly for her first year while pushing herself to work and brdbound. Since taking a whole year off work shes improved in leaps and bound. Walking everyday..socialising. going out to dinners..no pem no crashing.

Another guy whos been sick for five years and taken time off work is slowly walking moving and driving again. Hes making multiple medical appointments a week including with an exercise physio.

Meanwhile ive been consistently moderate to severe since i got sick. No meaningful improvements. Still housebound. Cannot walk. In a wheelchair..im lucky if in a day i can make 3 meals and shower and feed my cats. I spent my birthday bedbound. I havent seen my friends since January. Im so isolated cause a 10min conversation leaves me with pem.

Im just baffled at how they are making such fast recovery rates. I burst into tears and cried at my body in frustration asking what it wants from me to get better and why not me??? Just feeling shit. They all told me I need to have a better mindset and believe in recovery. And I do. But that mindset is slowly declining every month I notice no improvements despite strict pacing. Tbh the girl who went hiking I suspect has post viral fatigue not actually mecfs..the other cases are all legit. They told their stories early on and all had pretty genuine cases of pem and crashing. I didnt know recovery could happen so fast for some like wtf??? Why not me??? Ive worked so hard sacrificed my job on day one did everythjng right. It just doesn't feel fair at all.

I dunno if I will return,. I thought the support group would be a place i could go to with people who struggle like me. I honestly cant relate to these people. They are all talking about plans on what to do to recover capacity to work agajn and get to 100% meanwhile i would kill for 20% improvement.. why them and not me?

Im in another fb group similar story everyone's improving but me. One girl once she got her mcas back in order went from bedbound for a year to attending weddings walking 6000 steps running her business etc etc. Another girl did a few rounds of ivig and is back walking along the beach driving to friends parties etc etc. I have the same doctors as these two. I will be commencing ivig hopefully end of the year. Yet im not seeing the same improvements no where near. Even another girl I know in the group is struggling at moderate but she can stoll attend the occasional concert social outting and can marathon TV shows. She can walk and drive and shit.

I feel like im the sickest of them all. Its just not fucking fair. I feel like such a downer in every support group. Ill be reaching one year with rhis in June and I just wanna die.

Sharing a huge win. Im from Australia.. I was approved for disability for mecfs. When I applied I had been six for 8 months diagnosed for six so ir was 50/50 on if id get it. I worked SO HARD on my application had 3 doctors supporting me and a ton of medical evidence I had accrued. Now I can just rest a bit more. Use some money to hire more help. Bank savings and pay for my specialists. Im gonna be able to pay for my private health insurance again as I potentially may be doing ivig end of this year! Wooooo now I can afford it. Im gonna buy a present for my kitties as a celebration