#cfs me

[only-knives]

starting to understand the difference between a chronic illness flare and a ME crash.

i keep doing things based on how i feel in that moment. that isn't the right approach in ME.

i guess pacing (in severe ME at least) is less like slowing down and taking breaks and more like completing a course of antibiotics. except the antibiotics is aggresive resting.

and i really hate aggresive resting unless i cant tolerate the symptoms anymore and resting is the only thing i can actually enjoy

i just want to live as much as possible but i cant really do that if im crashing all the time from doing these simple things...

[deathofsix]

In the depth of my illness I thought about seeing anything other than the view from my window. I wrote about it in 2021, reflecting how covid had put me back in that place.

Almost 10 years on from the event that sparked the emotions behind that piece, I’m happy to update.

I see lots of things now. I see the city I missed, I see my regulars at work, I see the smiles on my friends faces and the lights of a dancefloor.

I see the floor as my legs give out, I see people’s shoes as they walk past me on the ground. I see the tabletop right as I lose the ability to hold my head up, I see the judgemental stares of strangers, I see security guards watching me as they debate kicking me and my friends from the club.

I see empty beer cans and the bottom of a wine bottle. I see someone I only briefly recognise in the mirror.

I feel more too. I feel the sun on my face, the wind in my hair, I feel my friends embrace.

I feel pain. I feel barely human. I feel like something that was alive once.

I see invites I will decline. I feel guilt. I see what this has done to me. I feel grief. I see my future. I feel angry.

Sometimes I wish I was still so unconscious I couldn’t see the world pass me by.

[calmmyfears]

it sucks that i need to have my energy at least at 3% before i can start taking care of myself. so those first few hours after waking up in the morning are always a struggle because i can only begin to feel reasonably okay when i gained enough energy to eat, take medication etc.. and on some days this takes forever which is so frustrating!!

[septembersghost]

marina posting today that she's been diagnosed with CFS/ME after struggling for seven years...my heart breaks for her, but i could also weep for the fact that any time someone discusses the agony and exhaustion of this disease, or any chronic illness, it raises awareness and legitimacy about how serious and life-altering it is. i wish her rest and recovery and some return of her health, with full acknowledgment that for many of us, that never happens. especially being as severely ill as i am right now - half my life has been stolen and consumed by illness, and much of that spent fighting to even get people, from family to medical professionals, to believe i'm sick. this is not an uncommon story, nor is it taking many years to be diagnosed. the more we talk about, name, and recognize it, the more people suffering invisibly will hopefully be seen and supported. 💜

[myalgicencephalomyelitiscfstom]

"Symptoms made worse due to physical or cognitive exertion (N = 1534)" in Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS)

From: "Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS): A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6468435/pdf/diagnostics-09-00026.pdf

[themortifying0rdealofbeingknown]

Having a chronic illness is fun cause every two weeks I'll be like this is not actually that bad and I think my diagnosis might've actually been false and then I do one thing wrong and my body's like Oh No

[lesbian-pining]

I do wonder if anyone has done any research/writing into the intersection of being a woman in pain (and often squashing down/ignoring that pain because that is what we're taught, often by example) and illnesses such as chronic fatigue syndrome/fibromyalgia? I think it'd be an interesting read and I'd like to see if others have noted crossovers in their own personal experiences like I have?

[hobieheaven]

MY SECRET ILLNESS + APOLOGY 🚑

The first time it happened I felt like I was going to die, like all the strength had drained from my body. Like I had walked into a wall of bricks I couldn’t push through. I prided myself on handling everything, no matter how hellish, no matter how I suffered, no illness I couldn’t come back from, no emotional destruction I couldn’t rebuild. Coming from an emotionally abusive family my survival has always been my highest priority, I always thought of myself as a one woman army. For the first time I’d ever experienced I had nothing left to give, nothing left in my body or spirit, my limbs which were strong just a day before, numb, tingling, aching, almost lifeless. I couldn’t get up, couldn’t walk, couldn’t make my own food, the personal freedoms which I’d held so dear were taken away overnight, I couldn’t go out, couldn’t see my friends. I had never felt young, yet I now knew what it was to feel hundreds of years old, to feel every suffering you’ve ever endured fall down on top of you until it caves in the protective dome you’ve built over your head. My brain was lost in a dark fog searching for answers, was it cancer? Deficiency? Flu? How could a healthy young person become life an ailing grandparent that fast?

After working for three years on a First Class Honours degree in Creative Writing I crashed and stayed down for three months, the remainder of summer spent with my time divided between the sofa and my bed, unable to get around, still unsure of my condition. Its difficult to express the sincere opinion that, umm, excuse me, I feel like I might die and my life is ruined, I’m an unemployed 22 year old women who is highly qualified with a good body and my looks intact who cant even get up and walk around.

Before I knew it the deadline for the Masters degree course I so wanted had passed twice over, my ability to work on resumes or even go out to deliver them had also gone to shit, each time I began to feel stronger and improve slightly with healthy foods and supplements to combat fatigue once again my toxic family would appear and destroy my progress until I felt ill once again.

In my darkest moments thoughts edged my periphery whispering that nothing would ever get better, this was life now. No hope. No way to fight. I had no more tolerance for my relatives poisonous ways, I knew why people ran away and lived on the streets. Because it was better than what I had dealt with my whole life, it was better than looking cruelty in the face and pretending to smile. After spending 22 years fighting demons I had finally encountered one which could not be taken by force. My illness.

With each relapse back into severe and debilitating exhaustion my recovery time was noticeably decreasing, I could go from feeling like I was running at 5% energy to 50% (which was as good as it got), and although my latest episode caused me to miss my own graduation ceremony and remain bed ridden, I finally went in search of answers.

I had all the signs and symptoms of Chronic Fatigue Syndrome, finally it had a name, this rock tied to my leg, weighing me down as I paddled for my life every day, just to keep from going under. Finally there were books, therapy options, nutrition, correct supplements, finally a label I could give to my doctor in the hope of treatment.

The moment my doctor diagnosed me with Chronic Fatigue Syndrome (also known as M.E or Myalgic encephalomyelitis) I held back my tears. Just to feel less alone, less muffled in deep black night, I wanted to spill every ounce of truth, that I survived Narcissistic emotional abuse, that I wanted rehab, that I needed a reason to hope.

Since then I have been looking after myself and taking daily walks as advised medically, I promised to myself that I would get the help I need and begin volunteering until I can finally apply for the publishing jobs I am qualified for.

Today was the day that I finally became quietly determined, to do what’s best for me, to live healthier and live BIG in spite of my illness, I can no longer sit here and watch the world go by in a flash, after all, I could be sick for many years, but why should that stop me dressing like the diva I always was? Why should it stop me having fun, going to eat with friends? Travelling to the places I’ve always dreamed of. Even if I have to be wheeled through Hongdae in a chair I won’t stop living, won’t let this defeat me. My dreams haven’t changed, it is simply that the way to them has changed direction, and so must I.

APOLOGY

For so long I have felt guilty, like I betrayed you, I created this blog with professional intention, to bring you beautiful well told stories that you might snuggle up in bed at night reading, to explore fantasies and romance. I couldn’t work on all the ideas I had, Hobie Heaven, my personal twitter and my news blog went to waste and I let a lot of people down, alot of people who actually ask me where I am when I disappear. I never found an effective way to explain to you, I am sorry for my absence and I ask once again for your trust in me, to wait and see the projects I have in store. No more will I let my aims go to waste.

For all my supporters, thank you, if it wasn’t for you, I would have fallen completely into darkness.

You keep me strong. You’re more than fellow fangirls, you’re fam. 💖💖💖🎀