u/Objective-Taro-8919

Im currently on day two of my period and I feel like I am crashing
Everything is heightened
I can’t handled the light anymore at all I have to close my blinds even with a grey day outside
grass cutter is out side and it’s making me wanna cry with how loud it is
I can’t imagine doing anything but lay here and hope for some relief I can’t even nap to help

I hate that this is my reality
About once a day I will get extremely angry and negative about everything
Anyone offering me advice makes me feel so much rage
Thinking of the fact I got iller because I let awful people take advantage of me and now they live great lives while I lose more everyday
Seeing regularly healthy people get sick and complain about it or get the treatment they need makes me feel like an evil person for hating them for getting the help they need

Not being recognised for living for others and seen as selfish when I would of left this world already if it meant I wouldn’t hurt my family but I stay only for them

Doctors acting like they know better when they don’t even know the name of my condition

Family members still not even understanding my illness when I flare so bad and it still shocks them

The fact I wasted my 20s having an eating disorder to finally recover at 29 just for my body to throw it back in my face so I won’t live fully in my thirties

The fact my ex that was abusive and made me crash from mild to moderate is living the life I wanted and suffers no consequences

I hate that it’s made me so miserable and mean
I am a kind and gentle person but I don’t know how to be that anymore

I see a lot of people on here for the USA
I wonder if anyone here is from Ireland or uk?
And have you found any help on nhs or hse?
Or private?
Any medication or treatment you’re on?

I have posted just previously i hope this isn’t a volition,I don’t know if double posts are allowed

I have had an ed for 15 years on and off
I relapsed after trying to recover last year
I lose 15kg since October 2024
I have been trying to maintain this weight and have been since the beginning of the year
I have thought about trying to gain a little in hopes in improves my me symptoms

But there is a part of me that is so desperate for help that I do ruminate on the thought of go lower

In 2018 I was hospitalised at 43-45kg
I’m now 49kg which is far off my lw
I don’t wanna go back there for ed reasons
I don’t know if it’s delusional or something but I feel as though the only time I was ever given medical attention and support from my loved ones was back then

I know rationally they will treat the ed and not my mecfs but it’s like I kind of want to say “I told you I was sick”
I’ve seen mecfs patients end up with anorexia (not because of mental health but purely because they cannot feed themselves) and they got treatment for their mecfs

I know it’s a long shot but im so tired and lost
I’m trying so much to just maintain this level of fatigue and health which is not worth it

I was on a phone call with my mum
I mentioned how I’d love to bring my cat over to the park as it’s lovely day and she keeps looking out the window and crying
My mum said what she always says which is “say to yourself you’ll get up and go and then you will” she always does this mind over matter bs
She then mentioned my sister is going to my cousins baptism tomorrow and said I should go (im not invited anyway but)
When I said “how do you think I could manage that” she said “oh do you not have the money?”
I honestly felt like breaking done in that moment because it just made me feel so lost and alone

It happens over and over were I have to remind everyone in my life I am disabled
They almost get annoyed that im telling them again but they’re the ones that keep asking me dumb questions

I had a good day last week and went to park (it’s right across from my apartment building) and I sat for 20 mins on bench with my cat

It came up in convo with my dad and I said I really enjoyed it and the next day I also had a good day (I mean good in the sense I could tidy up my apartment and not lay all day but I still couldn’t go outside)
My dads response which is always his response was “the fresh air and sun did you good,that’s what you’re missing,get that everyday and you’ll be better”

He isn’t wrong that fresh air and sunshine makes anyone feel better but it’s like so demeaning especially when I would love to get fresh air and sunshine as I know it makes me feel better but sometimes I cannot make it off my sofa or bed never mind go outside

I will do something once and they’ll not understand why I can’t do it again

I do understand to a degree where they are coming from as I dealt with a lot of mental health problems before mecfs so they know how important getting outside and being active is for me but it’s like they don’t realise I am not avoiding those things out of choice or out of not wanting to because of depression

I also hate when I explain to people in plain simple terms how my condition works and they still misunderstand

I honestly feel as though they think im putting this on myself

It is worse enough health professionals don’t understand but having loved ones not get it is so exhausting and frustrating

I am currently taking magnesium,iron,zinc,b12,l
theanine,NADS and vitamin d

I have been the severe end of moderate for around 8 months now
I woke up today feeling weirdly good
I hope it’s not a one off
But i worry if I do feel better and do things I’ll end up back where i started
Like last year and the year before I was mild and had some flares and I wonder if i go back to being mild,if i start living life I’ll get bad again or worse

this may be a sensitive topic and I don’t mean to offend anyone

a lot of my conditions like mecfs have little understanding and empathy towards them

And little to nothing in terms of treatment or recovery

i moved recently and got a new doctor

I understand mecfs isnt widely understood or knew about but when i explained it to her over the phone she sighed and said “so just fibromyalgia”

i am going to an appointment with her soon and im really nervous because my old doctor really took me seriously and respected my diagnosis and this one seems so impatient

ive spoke to others that have seen her and they’ve all said she’s very much like that and will get things wrong a lot and even need basic medical care explained to her by her patients

my routine most days gos as follows

(2 days out of the week may be different and I still feel the same but later in the evening I have more energy I use to wash my hair or tidy up but still very much laying all day before this,once week I may leave house with sister in car but can only manage 1 hour of being out and I will pay for it the days after)

wake up at 4-5am:can’t get out of bed but cannot sleep so scroll on phone

6-7am: cat cry’s for food,I drag myself into kitchen and give her plate of food (sometimes i can only give her dry food i left the night before because I cannot get up to give her wet food :( )

7am-12/1pm: go back to sleep

1pm: force myself to get up and move to living room,i take my cart on wheels with my meds,i make tea,water,feed cat again and lay on sofa

2-5pm: lay on sofa unable to watch tv due to sen overload so i simpit watch outside the window or scroll on phone or simply dissociate

5pm: get a little bit of energy and try to prepare food (usually something already made and I heat up)

6pm-10pm: eat food,try to watch tv,cuddle cat,try do some tidying that I can manage with my energy I have depending on day usually only lasting short periods of 10 mins max and then laying back down(usually washing the dish I ate from)

10pm-11pm: laying on sofa preserving energy before I can shower (I have extreme ocd and my entire day will revolve around having the energy spent showering)

11pm: sit in shower and so bare minimum (just washing body,no hair washing,no shaving,no moisturising)

11.30pm: go to bed

i have had a eating disorder for over a decade

i am also autistic and struggle with a lot of things that i need to be a functioning adult but I think to myself what is the point in me taking all these supplements,eating a good diet and trying to recover from my eating disorder,getting enough protein ,drinking enough water,improving my health if none of it is going to change how I feel

ill stil struggle to get out of bed,I will still be housebound,I won’t get any of the benefits from living a healthy lifestyle