Life in the Void

My bloodwork never matches how I feel. Treatments don't work or make me worse. I am constantly dumping energy into seeking new treatments that likely won't work. This system has failed us... ✏️ My ME/CFS Blog ❓What is ME/CFS? 👤 My Story 📄 ME/CFS Resources 🙏 Donate to ME/CFS Research 🖼️ My Print Store

I think of you all every day as I work to untangle the complex molecular basis of this horrific disease…I am very optimistic that soon the major mechanisms that initiate the disease will be found. This will allow a concerted effort to reverse the process and find a cure… Link to Fundraiser ✏️ My ME/CFS Blog ❓What is ME/CFS? 👤 My Story 📄 ME/CFS Resources 🙏 Donate to ME/CFS Research 🖼️ My Print...

Whatever you’re celebrating this holiday season, so many of us will be lonely…It’s important when we have lost something to not just focus on what we have lost, but also remember what we still have. This is the way we can survive anything. ✏️ My ME/CFS Blog ❓What is ME/CFS? 👤 My Story 📄 ME/CFS Resources 🙏 Donate to ME/CFS Research 🖼️ My Print Store

If we head into the Holidays with no plan and expect to "feel our way" through it safely, we will likely be in for a deathly surprise crash that could be devastating…So we need to make a plan ahead of time for how we will use our energy during the holidays…and stick to it… ✏️ My ME/CFS Blog ❓What is ME/CFS? 👤 My Story 📄 ME/CFS Resources 🙏 Donate to ME/CFS Research 🖼️ My Print Store

A great example of how our health care system fails chronically sick people: My Jtube clogged... A Jtube breaking or clogging is an emergency - it means a person cannot eat or take meds. You would not even leave a dog stuck in a house with no food or water. ✏️ My ME/CFS Blog ❓What is ME/CFS? 👤 My Story 📄 ME/CFS Resources 🙏 Donate to ME/CFS Research 🖼️ My Print Store

There are a million things I will never do again. They just keep adding up as the years go by. And as the people around me age, the opportunities for life experiences I have lost add up too…Someday I will be a part of it again. For now, I hibernate with the rest of you… ✏️ My ME/CFS Blog ❓What is ME/CFS? 👤 My Story 📄 ME/CFS Resources 🙏 Donate to ME/CFS Research 🖼️ My Print Store

I need to speak to a disgusting and ignorant post by someone on X/Twitter...No one with ME/CFS or Long Covid should EVER feel embarrassed by how they look or how they have to live their life, and no one with ME/CFS or Long Covid should EVER feel like they need to hide what they look like or what their life is like from the public. Fundraiser Link:  http://spot.fund/FindACureForMEcfs ✏️ My ME/CFS B...

Hi everyone, I’m doing another fundraiser for Ronald W. Davis PhD.’s ME/CFS research for my 41st birthday! http://spot.fund/FindACureForMEcfs …Since 2020 we have raised $184,000 for Ron’s research solely from my birthday fundraisers! This is incredible and only possible because of all of you…Let’s all come together and get Ron the supplies he needs to do these critical experiments that are honing...

It says a lot about the unique and widely misunderstood challenges that ME/CFS and Long Covid patients face that there could not be an ME/CFS Olympics. Because if we tried to compete and push the physical limits of our bodies like that, all the winners would simply be dead… ✏️ My ME/CFS Blog ❓What is ME/CFS? 👤 My Story 📄 ME/CFS Resources 🙏 Donate to ME/CFS Research 🖼️ My Print Store

No one ever sees the world of color that lives inside of me because the black void doesn’t let it out. I feel it, smell it, taste it. I exist there in every moment of my life. But the only thing anyone ever sees are the bits of dust of a broken down machine…When the world of color and light shines, this second world coughs and flounders and lays down a blanket of death… ✏️ My ME/CFS Blog ❓What is...

Getting through bad days with ME/CFS, Long Covid, chronic illness, or disability.   ✏️ My ME/CFS Blog ❓What is ME/CFS? 👤 My Story 📄 ME/CFS Resources 🙏 Donate to ME/CFS Research 🖼️ My Print Store

A Severe ME/CFS Patient in the UK named Karen Gordon went to the Conquest Hospital Hastings when her Jtube broke in hopes of getting a new one installed. Instead, the hospital has refused to give her a new Jtube or let her go home with Total Parenteral Nutrition (TPN), holding her hostage at the hospital for months. They have now given her an ultimatum that she must decide within 48 hours between...

It is a travesty that Maeve did not receive nutrition like I received.  I was just as sick as Maeve with very similar symptoms, including sensitivity to stimuli like light, sounds, voices and the company of other people in my room and like Maeve, I could not eat enough food to survive.  If I was treated the way Maeve was treated, I would be dead just like Maeve.  Luckily, I had doctors who viewed...

Not having a home is not a crime!  Yet after the Supreme court ruled that it was constitutional to make it illegal to sleep in public spaces, countless towns and cities are sure to follow suit in the United States and make it illegal to sleep in public spaces.  (Illegal to sleep!). Sleep is a basic necessity and if you don’t have a home, you have no choice but to sleep in a public space.   Beyond...

I haven’t felt the wind on my back in 11 years. But I still feel free…We are not our circumstances. This physical world does not define us nor can it confine us. We are infinite beings…This year on ME/CFS awareness day, let’s acknowledge what ME/CFS has taken from us, But let’s also look around at the life we still have… ✏️ My ME/CFS Blog ❓What is ME/CFS? 👤 My Story 📄 ME/CFS Resources 🙏 Donate...

An anthem for ME/CFS and Long Covid patients leading up to ME/CFS Awareness Day. YOU ARE NOT ALONE. This song is a beautiful testament to our connectedness no matter our physical isolation. -> Listen to the song here <- ✏️ My ME/CFS Blog ❓What is ME/CFS? 👤 My Story 📄 ME/CFS Resources 🙏 Donate to ME/CFS Research 🖼️ My Print Store

I’m desperate to feel better.  I would do anything to feel better and I spend an enormous amount of energy following routines and taking medications and supplements to try to get better.   This desperation to get better is something we all face.  We’re willing to try anything that we know doesn’t harm us like GET to get better.  But at what point does the energy we put into these treatments hurt u...

Laziness is not the opposite of being sick. How have we come to this place where if we show any lack of productivity we are terrified of being labelled "lazy" and therefore not legitimately sick? …how do we start to re-frame the prejudice against us? ✏️ My ME/CFS Blog ❓What is ME/CFS? 👤 My Story 📄 ME/CFS Resources 🙏 Donate to ME/CFS Research 🖼️ My Print Store

ME/CFS / Long Covid is an ever changing journey and we never know where it will take us. We can do the best we can and no more; After that, we must try to find as much life along the way as possible, knowing that it is fleeting like all else; It slips through our fingers the moment we try to hold onto it. But as it slips through our fingers we don’t need to despair because we know we will find new...