Life in the Void

Imagining but never doingDreaming but never experiencingLonging but never feelingSeeing but never touchingBelieving but never receivingEnvisioning but never achievingDriven but never accomplishingLoving but always being alone.The experience of living with ME/CFS.  ——————💙 Whitney ✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

In January this year I spent 3 weeks in the hosptial for a pretty serious infection and related conditions.  My experience there was at once a surprise and a discouraging setback that added to my symptom burden.  In this post I relate my experience and thoughts on what it means for all of us.  ✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

I had a very serious medical incident happen right after posting my last video about talking again and have been through a lot...I'm ok now, I’m recovering and my body is going through "growing pains" or maybe more accurately "healing pains" adjusting to new meds and a possibly long healing process…✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

I started eating again in 2024.  After 11 years not eating a crumb of food or even drinking a drop of water.  I got all fluids and nutrition from tubes inserted into my body.  For 11 years.  In 2025 I have another big improvement to announce.  I have started ‼️ TALKING ‼️ again after 12 years of not saying a word to anyone!  What will 2026 bring❓✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

…every single researcher at Ron’s recent Working Group Meeting - every researcher there said they don’t care if they are the ones to discover the cure for ME/CFS, they just want a cure to be found to end our suffering.  That is unheard of in scientific research or in any field of study - even in the arts…one thing to be grateful for today…✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

My Jtube broke finally and I have to go to the hospital tomorrow and I’m feeling stressed...It is so hard seeing the real world and really feeling it and then coming back to my room and closing all the doors…The spontaneity that healthy people show so clearly is at once a refreshing reminder of what life is supposed to be like, but also a shocking and profoundly sad reminder of what my life is like…✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

To all those living in silence and darkness. Today we take a moment in silence and darkness to honor your courage, your bravery, your resilience, your strength, and we acknowledge your profound suffering, agony and loss…✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

That is ME/CFS. We live with world champion symptoms with no idea what is causing them or what will happen with those symptoms or what our future holds. We hold onto hope but are often crushed by this harsh, unrelenting illness…✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

I see people protesting the rights of many marginalized groups and important issues. I see people up in arms over injustices faced by people all around the world…BUT WE ARE DYING. Not to mention suffering endlessly from symptoms that are often only comparable to what any other human being experiences right before death. For neverending decades. And I don’t see anyone even blinking an eye. I don’t see anyone even seeing us. We do not even exist for most of the public in this world…✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

The "Big Beautiful Bill" that Trump signed into law on the 4th of July will take away insurance from an estimated 17 million people, mostly from people on Medicaid. I want to tell you how losing Medicaid would impact me directly.…If I lost Medicaid, my parents would have to sell our house to pay for medical expenses that keep me alive…What are we doing America?…When has taking from the poor and giving to the rich been something anyone ever actually champions?✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

This 4th of July, if I could fly an American flag, it would be flown upside down…Today should be a disgrace to all Americans…Today President Trump signs into law a bill that will take away healthcare from 17 million Americans…most of them on Medicaid...✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

I’ve done most of my "growing up" here in bed. And lately I’ve realized that "growing up" hasn’t been about figuring out the whole universe, but a process of acceptance - accepting that I don’t have it figured out and most importantly accepting myself and loving myself without "knowing it all"…And this is part of one of the saddest things about living with ME/CFS. Teaching us all so much about the essence of life and how to live it in a good way but then keeping us from putting those lessons to use out there in the world…✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

I feel like I am in a position where I have to be against the whole world because the whole world is against me…But I don't enjoy that, I didn't choose that. I was put in this position. I love this world. I want to be a part of this world…Not excised like a broken part, tossed aside and marginalized and painted in all kinds of colors that do not define me and which I never chose…✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

I'm sick of ME/CFS being compared to a never-ending flu. This ain’t no f*ing flu. I feel like every system in my body is broken and in pieces. I am mentally and physically 1% as alive as I used to be…But even if you have a very severe flu and are bed bound, the never-ending part is a huge deal…✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

Starting a new day with ME/CFS, with full awareness of the suffering that lies ahead and the helplessness of a reality with no effective treatments, no suport from the world around you, and no concrete knowledge of a cure; This is one of the most profound acts of courage...✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

This is ME/CFS. Unrelenting. Unforgiving. Never ending. You fight and fight for crumbs of life that most muggles throw away. Crumbs that are not even good enough for the dogs. And then ME/CFS launches a new assault and you are back in the trench you were in years ago. No mercy. No solace. A forever war that keeps taking and taking and taking…✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

Chocolate, no joke, makes me feel better than all of my huge box of supplements combined. That is, in the short term. In other words, the meds and supplements I’m taking are I’m *sure* helping me more than chocolate in a more long term sense, but chocolate…✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

I often say this to healthy muggles:  Close your eyes and picture all of the things you do in your life…Now imagine removing 99.7% of those things…✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

I want to announce my new Print Store! I have been working on putting this store together for 2 years now…The images were all taken before I became severe with ME/CFS in 2013…So it is a sort of parallel dimension time capsule of what could have been with my life. I want to share these images and possibly prints of these images with all of you! ❤️✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

Memories tearing like tissue paper,Of all the dreams,I thought might be made real,Tearing into pieces so small,They float away,Into the forever night of ME/CFS…✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

I started eating real food again in 2024!...I have now stopped the Peptamen food formula completely, and get all my calories from real food!...It has come time that I feel stable enough with this new change that I feel comfortable telling you all. And I want to tell you because I want you to hear this story!✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

Will you take the 2025 ME/CFS Valentine’s Day Challenge and reach out to 2 people you love and tell them you love them and why? …You will make their day. And if we all do this, it will have a ripple effect and reach through the ME/CFS community and none of us will feel alone or unloved today.✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

Psssst! Hey fingernails! Didn’t you get the memo? What are you doing growing so fast like that, not to mention those perfect cuticles! We are in total body shut down mode here, you’re not supposed to be doing anything right. [Trigger Warning: This post is a joke]✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

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 Store

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 Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

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 in closer and closer to the root cause of ME/CFS!✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

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 ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

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 being sent 100 miles to the St Mark’s Hospital in London to be re assessed for GI issues by Doctors who know nothing about ME/CFS and do not follow the NICE guidelines and therefore will not give her a Jtube. Or they will discharge her with no TPN to starve to death at home. Either option will kill her. This letter is an urgent attempt to make the hospital aware that they will kill her so they will change course and send Karen home with a PEG/Jtube or TPN so she can live.  ✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

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 ME/CFS as the serious physiological disease that it is, and who understood that the risk of needing to take antibiotics occasionally or add a few extra steps to my daily routine was better than the certainty of death from starvation, dehydration or malnutrition, which is what killed Maeve.  Maeve just needed a way to get nutrition into her body.  I got TPN and lived.  Maeve was denied TPN and died.  ✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

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 the morals or ethics of this it has far reaching consequences for #MECFS and #LongCovid patients.  How many ME/CFS/Long Covid  patients have dipped into homelessness at some point for days, months, years or have been stuck that way?  ✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

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 to ME/CFS Research🖼️ My Print Store

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 us more than they benefit us?  ✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store

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 life around the next bend. There is always new life, nothing ever stays the same. Not our weakest, most horrific living nightmares or our life affirming reprieves from the void.✏️ My ME/CFS Blog❓What is ME/CFS?👤 My Story📄 ME/CFS Resources🙏 Donate to ME/CFS Research🖼️ My Print Store