#Mecfs

[chronicillnesshumor]

[mrs-snape5984]

„You’re not alone, together we stand. I’ll be by your side, you know, I’ll take your hand…”

“Just stay strong, ‘cause you know, I’m here for you…” (“Keep holding on” by Avril Lavigne)

I decided to set a trigger warning on this post: Miscarriages, high risk pregnancies, ICSI treatments, traumatic wish for a child journey, hysterectomy. So, please feel free to skip the following x paragraphs, if you feel triggered by these topics. Thank you.

Those of you lovely people of Snapedom, who know me and my way of blogging about Severus and my personal hardships might have noticed, that I’m mostly venting about ME/CFS and the crumbs, which are left from my former life. Since I can’t do much about it right now, I decided to “fix” another one of my countless issues…an internal wound, which desperately needs to heal!

As some of you might remember, I’m a mother of three wonderful children. There are my eleven years old twins and then there’s my six years old daughter. My pregnancies were the result of a long and painful journey of ICSI treatments, several miscarriages, way too many tears, about ten surgeries - due to Endometriosis and myomas - which eventually ended in a hysterectomy four years ago.

My desperate wish for a child led me to some decisions and life choices, which I probably wouldn’t have made, if I would have been clearer…maybe more stable in my whole mindset. One of these choices was a totally over rushed marriage to a narcissistic man, who made me believe, that he wanted the same. Gosh…I’ve been so desperate and so fucking stupid! Well, at least I got my twins because of him.

I went to the appointment for the transfer of the embryos on my own. He didn’t want to join the procedure…and I should have known, that he was already saying “goodbye” back then.

The pregnancy was rough. I had to lie in bed from the 8th week of pregnancy until they were born as premature babies in the 29th week of pregnancy. The last 4,5 months of pregnancy, I had to stay in the hospital…fighting for my babies’ lives all on my own. The father of them had decided, that he didn’t want to be a father anymore…wow…

I don’t want to go further into details about this phase of my life…at least not yet. I commissioned my friend @alinearthp for this project and asked her for several drawings of the different phases of my journey to become a mother. This artwork will be the start of my healing process…and I’m incredibly grateful, that you’re doing this for me, Aline! I know, that you’ll need time to draw all these wishes of mine, but I’ll be patiently waiting for each of your breathtaking pieces of art, my dear!

So, for the next couple of months, Severus will accompany me on my path through this phase of my past…just like he did back then, when I spent months in a hospital bed in “Trendelenburg” position. During this period of my life - and to be honest, in so many other phases of the past 21 years, as well - I clung to my imagination of Severus in order to feel less helpless and alone. His resilience and determination have always been my inspiration to keep going through all these hardships, which life kept throwing at me. He’s the love of my life…and he will forever be the guiding light in my darkness.

🖤Severus & Julia🖤

🖤Sevy & Jules🖤

[violet-phoenix-nebula]

When someone has a chronic illness or is disabled and can't work, they say a few common things.

It must be nice to sit around all day/sleep all day.

I wish I could sit around all day and not work.

I wish I could sleep all the time.

They don't want to sleep as much as we have to. They'd feel sick and sluggish.

They don't want to sit around the house all day not doing anything. They'd be bored out of their fucking skull.

It's so unbelievably fucking frustrating, but there's a fundamental lack of understanding.

They liken our lives to a vacation, imagining that it's fun and relaxing and we can do whatever fun things we want to all the time.

In reality, it should be likened to an extended hospital stay. You can't do anything and you feel like shit.

[myalgicencephalomyelitiscfstom]

Press release for this Canadian study [Metabolomic and immune alterations in long COVID patients with Chronic Fatigue Syndrome]:

“We do not actually believe that long COVID is a separate new disease,” explains rheumatologist and clinical immunologist Jan Willem Cohen Tervaert, professor of medicine, who is an expert in fatigue associated with rheumatic illnesses.

“Some symptoms — such as the loss of taste and chest pain — are very specific for COVID, but we see a common pathway with ME/CFS, which leads to the same fatigue, brain fog, post-exertional malaise, widespread pain and non-refreshing sleep,” he says.

[i-the-spoonie]

Feeling this right now :(

[haridraws]

Hourly comic day always ends up being chronic illness diaries for me. But seeing other disabled people share vulnerable stuff honestly helps me a lot, and if I can pass just a bit of that feeling along, it'll be worth it.

[neonarboretumart]

🎀And we shouldn’t be treated like we are 🎀

This is my most popular post, so I just wanted to add, if you’d like to support my work, this is my Etsy shop:

[gentlemanbutch]

I am so tired of medical professionals. I am so tired of having to try to speak in code so they listen to me, because apparently just outright stating my symptoms is the incorrect way of doing things. I am so tired of trying to give them enough details so they understand, but not too many details, because then they might think I’m dramatic. I’m so tired of them not bothering to learn any of my history and just being told I just need to eat less, or drink more water, or get out and exercise. I’m so tired of having to pretend to not know what I’m talking about. I’m so tired of arrogant pricks who don’t know what’s going on being too proud to refer me fo someone else. I’m so tired of being brushed off if I did my own research or have theories about what’s happening in my own body. I’m so, so goddamn tired of not being believed about the experience of my own life.

For all these providers with enormous fucking power that you use to abuse, gaslight, and dismiss patients who have spent years in pain — I hope you rot.

[thatdiabolicalfeminist]

I struggled to find a good quote from this because it's literally all worth reading.

This is about myalgic encephalomyelitis, previously called chronic fatigue syndrome. This is my most debilitating illness. When my partner sent me this article, she said, "He's basically just describing your life."

I'd be grateful if even people without ME and especially healthy people would read this and consider sharing it. There isn't much general awareness about this incredibly debilitating illness, and this piece succinctly describes what it is, what it's like to live with it, and some of the challenges ME patients face.

If you hit the paywall, use this link instead: https://12ft.io/https://www.theatlantic.com/health/archive/2023/07/chronic-fatigue-long-covid-symptoms/674834/

[running-out-of-spoons]

pain=no sleep

no sleep=pain

how do I win here, this is exhausting

[thesecretlifeofmecfs]

ChronicVerse

[chronicillnesshumor]

[420spoons]

Meme painting of a woman adorned in royal clothing and jewels. The text over the image reads, ‘Disabled people, watching all of the accommodations that were created because of COVID get ripped away as part of able-bodied peoples’ “attempt to get back to normal.”

[mrs-snape5984]

I’ve commissioned the wonderful @sleepybradipo for those pieces of art…and I couldn’t be happier with the outcome.

It shows me, defending and protecting my beloved Severus from his goddamn bullies. I’ve just entered my “overprotective-bitch-mode” for him.

And in the second picture, I’m comforting my Sevy with a kiss on his adorably crooked nose.

It’s one of those many scenarios, I’m using in my head (and I’m also writing about) to escape my devastating reality of “living” (what an exaggeration…fuck!) with ME/CFS. Since I’m always in my dark room…isolated from the world with all those overstimulating things (and people), I’m clinging even more to my imagination of Severus. He’s been there for me for more than 20 years. His resilience, his bravery and his stubbornness were always the most inspiring and helpful aides in my life. My love for Severus (especially the book version of him) goes deep…

@sleepybradipo, you’ve brightened my day with your artwork and I’m extremely grateful, that you’ve spent your time and talent for my ideas. Thank you so much! I hope, I may commission you again!

🖤 Severus and Julia 🖤

[myalgicencephalomyelitiscfstom]

On Ed Yong's July article, "Fatigue Can Shatter a Person: Everyday tiredness is nothing like the depleting symptom that people with #longCOVID & #MECFS experience"

(Clickable link in bio)

Screenshot from American ME and CFS Society newsletter

[i-the-spoonie]