Lethe

Is it really a doctor's appointment if you're not left dejected and disillusioned afterward?

Lots of people struggling with the difference between "cannot ever ever ever ever ever once do a thing because of my disability :[" and "cannot do a thing reliability enough to satisfy the person who decides if I get to pay my rent and buy food, because of my disability"

As of today, I've now had #ME for 30 years. I was 14, and previously healthy. I woke up feeling unwell and got sent home from school after the first lesson. And that was that. I can't really recommend it. #MECFS #NeuroME

I almost forgot it's coming up on 6 years of continuous illness. I don't have much need to pay close attention to the date. I don't go anywhere... except doctors appointments. I had to reschedule one and realized the date. #MEcfs #LongCovid

Waves of nausea around the same time of day most days during PEM. Midday. Always midday. It's not a migraine. Not hunger. What else could be doing this? #MEcfs

Imagine being told your illness isn't something you'll get over...it's something you'll live with. There's no cure, no countdown, no day you wake up and feel better. Just managing symptoms, coping with uncertainty, and trying to find joy in the middle of it all.

Everything is super important. Until you are sick. Then you realize there was only ever one thing that was important. Your health.

So anyone else have multiple beau's lines on their nails, and their hair falls out every few months? #MEcfs #LongCovid

So grateful for all the support but at 4 plus years I really need to clear this goal as soon as possible. xo

Fern friend giving the waffle plant a hug.

Research and implementation of research takes a long time. Obviously it has a priority for attention and resources because it's needed. But it would be neat if someone also gave a thought to the quality of life issues that people with #MEcfs face. In the meantime, you know.

In the beginning of the illness I still knew what my children's friends looked like. What their schools looked like. When they went to a relative's house, I could imagine them there. Now they're at new schools. The relative has moved. They have new friends. I no longer can picture any of it. people I've never met, places I've never seen. Sometimes these realizations sneak up and hit me hard, like a wave crashing down, knocking the air out of you, the sob of grief, and the feeling that when you breathe again you don't know if it will be air or water.

Oh look 👀 another new discovery about human anatomy. It’s almost like, follow me here, it’s almost like we don’t know everything about the body and its various diseases yet.

Maybe this is a trifling thing but it’s something I see people constantly not getting right. So *deep breath* here goes nothing. Post-exertional malaise is best understood in the context of ME/CFS. It is required for the diagnosis, and so, we say it is the hallmark of ME/CFS.

I ordered chocolates for my 7 year old for valentine's day and someone stole the package off my porch. 😞

Transformation, not something we as humans normally think of much, but as ME patients, your life might as well be a daily metamorphosis. How come I saw you yesterday walking by fine and today you are barely able to move, are you the same person? Yeah I am

Like many severely disabled people I feel like I have to treat my caregivers with kid gloves to make sure they stay happy and stick around. But sometimes when I'm extremely ill I can't hide my irritation at mistakes and after I show it become afraid they'll quit. Sigh.

I've always liked the movie, but I watched it again recently... Moon, with Sam Rockwell. It's even more relatable these days, slowly deteriorating with ME, and the isolation that comes with it. I've even started bonding with my plants.

I just sit and watch the light on my plants these days.

The morning sun through my alocasia cuprea.