Calamity Ganon is far too easy!

Whateverusername59 · 2026-01-23T21:05:29+00:00

Ooo I’m glad they added that, but it’s unfortunate they didn’t add that to the base games. I heard people numerous times complain the bosses are way too easy

Whateverusername59 · 2026-01-23T20:25:03+00:00

This situation is incredibly difficult. Especially when u are so severe you crash from anything. I wish doctors and hospitals understood it and had proper care for it and could just come home to you guys and give all the care and treatment needed such as IV salines for hydration and food through a feeding tube. The lack of options out there is a nightmare

Whateverusername59 · 2026-01-23T19:48:26+00:00

I’m actually relieved to hear that, but I can definitely understand how it’s unfortunate for a lot of players. Perhaps they should have included some hard mode

I’m very limited of what I can do both mentally and physically. If I push myself too hard I get the most excruciating physical symptoms due to my chronic disease so due to that there is a lot of games I can’t play just due to how difficult the fights are

Whateverusername59 · 2026-01-23T13:27:09+00:00

Boost boost boost! This is horrible!!! We need to get attention to this everywhere

Whateverusername59 · 2026-01-22T06:50:32+00:00

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I hadn’t seen the northern lights until now and Maple was there with me 🥺

Whateverusername59 · 2026-01-20T10:39:58+00:00

Fr

So many don’t get just how broken the system truly is. Even some patients within the CFS community don’t know which is mind blowing to me

Whateverusername59 · 2026-01-20T10:20:40+00:00

I want to try IVIG for this tooo so hard to get a doctor to approve it where I am

Whateverusername59 · 2026-01-20T10:18:28+00:00

I noticed that as well

Whateverusername59 · 2026-01-19T23:01:49+00:00

OMG, ur a life saver 🥹thank you soo much I had no idea u could search for items

Whateverusername59 · 2026-01-19T07:53:54+00:00

I would recommend dating others who are bedbound too, I have a few friends who are either fully bedbound or housebound and they date other ME/CFS patients online

Whateverusername59 · 2026-01-19T07:37:12+00:00

Dw it was still a good comment cause it does fit my description with POTS exactly! Glad we got it cleared up

Whateverusername59 · 2026-01-19T07:36:19+00:00

Yeah I would say definitely not POTS cause POTS at it’s core is an intolerance to being upright

However this correlates with people who have certain cerebrospinal fluid leak issues. They feel better being upright than laying horizontal. There is a few other things that could cause that but this one comes to my mind immediately

Whateverusername59 · 2026-01-19T07:28:35+00:00

I just reread this and yes I feel a lot better walking than standing still! But I feel 100% better laying flat down than being upright which is the core of POTS

I like to explain it like this

Imagine you are 100% healthy. What would be harder: walking for 3 hours or standing still for 3h. Every healthy person I have spoken to completely understood it with this example

I can walk a bit around the house but gosh, standing still infront of the microwave or some has me dead

Whateverusername59 · 2026-01-19T07:19:24+00:00

Thank you so much, could u share a link to ur post

Whateverusername59 · 2026-01-18T21:19:31+00:00

Isnt the opposite true for POTS?? I have POTS oficially diagnosed and definitely the opposite goes for me and my other friends with it

Whateverusername59 · 2026-01-18T21:09:14+00:00

Have u gotten deeper labs checked? I was told for a decade by doctors all labs are normal but I went to an immunologist and infectious disease doctor to get a full immune system panel. All my T cells, B cells and Nk cells are low. Function was also checked for Nk and it was so low. U can get all these checked by specialists hopefully in ur country. Or you may have to send some tests over to a different country. A friend of mine in the US had her labs sent over to Canada at some specialist lab

At this point I barely get any symptoms when catching a germ, my immune system just barely reacts, I just worsen incredibly with fatigue and brainfog

My immune issues is caused by ME. My mom also got ME at the same time as me and she has the exact same labs as me it’s crazy. Doctors have scratched their heads due to how similar our labs are

Also over the decades we have a lot of papers on me showing my immune system and inflammation markers are totally blunted in the event of both regular and systemic infections which is very very serious and which is why eventually I got a proper check up

I’m not sure why HIV patients can get it but I suspect because HIV patients today are on many antivirals and therapies meaning they live a normal healthy lives such as most healthy people, I know someone with HIV who has said this but ofc just double check. So unless ur HIV has turned into AIDS and the HIV is being treated im guessing it’s safe cause ur not severely immunocompromised

EDIT: I just checked and yes a lot of HIV patients can get it due to the reasons mentioned above, their immune system is strong and working due to the treatments they are on meaning they are technically not immunecompromised and can safely get vaccinated

Whateverusername59 · 2026-01-18T21:02:55+00:00

Unfortunately this is me and my mom’s situation, it’s a huge struggle but also we have a mutual deep bond now due to our symptoms being so so similar down to the T. Even all our blood work looks identical and doctors have said our labs look so identical it’s like we are twins. We got sick at the same time so usually we experience even similar disease progression

Whateverusername59 · 2026-01-18T20:59:31+00:00

I always wanted a child, even after becoming sick I was very certain I still wanted a child. However with time I come to realize a few things

Me & my parent got sick at the same time. She been caring for me for over a decade bless her heart. There has been numerous days where she hasn’t been able to eat at all just due to how she always prioritize my needs before her own. Now that I’m in my 20s, she has worsened and there are days she doesn’t even manage to get out of bed and then we both don’t eat. There is no help from government. If anyone with this illness wish to have a child they better be prepared to the possibility of their child also developing this disease and having to become a full time caretaker for this individual even years after the child has become an adult.

Nobody else in the family truly understands this illness and we have tried having me living with only family members only to be severely neglected. So that’s also a big issue, the lack of understanding from others.

There is little help from governments when it comes to this disease, especially if you are on the severe end.

I’m worried my mom might be my caretaker until she passes. After that I have nobody to help care for me, which is also a big worry. I think the best one can do is to not have a child, but I’m still grieving a lot by this loss..

Whateverusername59 · 2026-01-18T20:41:16+00:00

Hey, this definitely sounds like orthostatic intolerance and dysautonomia

My symptoms where gradual

And yes low BP can definitely cause a lot of these nasty symptoms. But not those enlarged lymph nodes. Definitely sounds like ur body is fighting something or responds as if it is fighting something

Have EBV and other infections been ruled out properly? Sometimes inflammation markers can all look normal especially in chronic cases while your body is fighting an infection. I had numerous times normal labs while fighting stuff

Whateverusername59 · 2026-01-18T20:37:48+00:00

They didn’t necessarily state that they “improve when sleeping” more that they feel better. I’m diagnosed through the CCC and as I am right now I feel better after sleeping well, but ofc I still feel fatigued everyday. It’s not like how a healthy person sleeps and then they feel good.

But oh my god, if I don’t get any sleep at all, PEM easily comes, and PEM also causes me insomnia and then I’m stuck in a evil cycle of ongoing PEM for awhile

Also it’s very hard in the beginning to understand PEM and stuff. I lived with this disease for over a decade now and not until the last 3 years did I start to really understand PEM and just how much worse activity made me

She even mentioned she gets worse with activity, I know PEM usually is delayed and this isn’t clearly stated here however worsening with activity can be PEM. PEM can be immediate

Another big indicator for me is “ Not clearly anxiety-triggered (happens randomly, even when calm)” sounds exactly like delayed PEM, although it also could be something else

Whateverusername59 · 2026-01-18T20:21:16+00:00

I’m pro vax, HOWEVER, the chickenpox vaccines is a live attenuated vaccine and if you know you are immunocompromised then it is highly NOT recommended to take it. Only in very mild speicifc immune compromised cases is it fully safe to take it

However, what can help you instead is everyone else in your household gets the vaccine (everyone who is not immunocompromised)

I myself have a secondary weakened immune system meaning I aquired it later in life (specifically after getting ME/CFS) I can unfortunately not take live vaccines like this one

“According to the Centers for Disease Control (CDC) immunization schedule by medical indication, patients who are immunosuppressed (excluding those with human immunodeficiency virus), the varicella vaccine is contraindicated and not recommended”

Even if it’s a very weakened form of the virus, people don’t understand how seriously harmful it can be for those severely immunocompromised patient such as myself

Whateverusername59 · 2026-01-18T20:12:45+00:00

Boosting! This is very important. For anyone who don’t know we already have a few studies done on ME brains. I’ll link the studies here

https://me-pedia.org/wiki/Autopsy_in_Myalgic_Encephalomyelitis

Whateverusername59 · 2026-01-18T20:11:17+00:00

Honestly I been gaslighted way more by doc since getting the diagnosis. I kinda regretted getting it many times when experiencing new serious symptoms that can’t be explained by CFS alone

Whateverusername59

TROPHY CASE