Chronic Fatigue

Hi, my name is clemcreates. I'm here because I’m living with ME/CFS

#MightyTogether #Anxiety #ChronicFatigue #ME

Hi, my name is Mabel4. I'm here because I have a rare autoimmune disease amd suffer from chronic fatigue and pain.

#MightyTogether

This post-op experience is a bit text book but doesn’t make it easier… I’m basically spending days by myself, doing loads of nothing, and taking care of my eye so it heals soon… it’s depressing.
In a way… I kinda regret the surgery, and I don’t know how to say it, it’s just that I never cared about having more vision, so spending days unable to live my regular life, with some amount of pain that’s getting better over time, having to take care of this eye… sometimes I kinda wish I didn’t go through, I know it’s an emotion based kind of feeling and very human, many people after necessary surgeries feel some amount of regret, but it’s temporary and I’m just waiting this time to pass.
Another emotional thing that’s been happening is that… although I usually appreciate being by myself, doing my own thing, usually in the dark… it sucks! Perhaps that’s because I cannot really do my own thing, because I have to be sure that my head stays lowered and I don’t want to risk accidentally forgetting to lower my head while on computer. - which for me is possible to use because screen readers!
So I’m spending my days basically doing nothing, being useless, by myself, in the dark because photophobia is extreme and cherry on top is that it got cold… which I don’t dislike, I actually really like the cold, but I usually like it because I can leave my house and do my daily activities with more energy and comfort… and I’m not allowed to do that right now, so I get depressed…
I want my life back… this eye is healing very well IMO, but I just want my life back and some human interaction sometimes, not all the time, but sometimes.
Also… on Monday the doctor told me to take a medication that messes with some electrolytes… he said if it got unbearable I could interrupt, and I will say that thing was evil, I felt completely fatigued. I would argue that I never felt so disabled, with all my disabilities and comorbities, like I felt with this med… my mum told me to interrupt and I did before yesterday and thankfully I’m starting to feel alive again.

Hello! Welcome to The Mighty Reiki Share! A Reiki Share is where people gather to share reiki healing (sending healing energy) so it usually consists of practitioners as well as people looking for Reiki and that also includes practitioners looking to receive Reiki. I am a Reiki Master and am happy to share Reiki here for anyone who asks. It's basically going to be free-flowing through this whole group! I am trained in distance Reiki which helps since we are online and living in so many different places. We are not talking business here, just sharing healing energy so we can help one another! 🙏🙌✨️ #MentalHealth #ChronicPain #Cancers #ChronicFatigue #MightyTogether

Hi, my name is AGFern12. I'm undiagnosed and am certain I have chronic fatigue.

#MightyTogether #Migraine #Fibromyalgia #PTSD

So… I still didn’t have my surgery! On Saturday they texted us to tell us it’s postponed for Thursday. At least this time we didn’t go to the hospital and did all the process for the hospitalisation just for them to come and say it’s postponed, so I give them that!

My birthday is tomorrow, which was something I was laughing about because I was expecting I’d be in post-op recovery during it. It’s a bit ironic and comedic that it got postponed to the day after it, like if they knew and decided to allow me to have and enjoy my birthday without an operated eye, so I will enjoy indeed!

As for how I’m feeling about this surgery, that isn’t close to funny, I kinda feel that the doctors disregard how this situation affects my mental health. My mum said “but that’s how human medicine works, they put each category into a certain specialty and don’t touch it”, which is kinda true, they are only considering my eye, not my person.
But it really messes with my mind, I touch my eyes and my left eye is strong and firm, while my right eye is smaller, and squishy, due to the lack of intraocular pressure. I close my left eye, and all I can see is a tiny area of my central vision that still receives light and isn’t detached. And worse is that it has changed, so the retina, even if slowly, is detaching more.
Even if I try to be rational, it’s hard to not just feel this withdrawing feeling that I need to accept that I will lose that eye. Perhaps not the physical structure itself, but the vision. And I always say I don’t care about losing my vision, and look, I usually don’t. But I had a kind of comfort when I would think that being a Retina Dystrophy, I could retain light perception, now that comfort is gone, because being a retina detachment, if detached, I wouldn’t even have light to see. And that’s honestly not cool, and not so nice. As much as blindness doesn’t scare me, not retaining the light perception messes a lot with my mind, takes away that comfort of the possibility to turn on some light if I need a certain closure.
And another thing is that my retina has a lot of scar tissue already, they will need to cut off that scar tissue in the hopes they can reattach it, but they already said it will likely detach again. For the time being, I retain my left eye’s very limited vision, but it’s hard to be optimistic, even more considering my left eye was the one we expected to have more complications as it is a longer eye because of high myopia, both have it but the left is higher, and a captured IOL from my cataracts surgeries. So in the end… I have to always observe the early signs of a detachment, but it’s very likely the left retina to also detach, and my retina is still atrophying by some condition we weren’t able to figure out yet, and it’s going towards the need for a genetic panel, that likely costs over 10k BRL.