Life in the Void
Living with ME/CFS and Long Covid and other Chronic Illness or Disability. Follow me while I explore the challenges, the suffering, the darkness and the light while living with a chronic illness or disability. Along the way I will share insights into how I survive, how I struggle, and how I STAY ALIVE. ❤️
Episodes
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…
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 no...
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 som...
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...
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 esse...
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…
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…
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...
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…
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…
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…
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! ❤️
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…
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!
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.
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 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...
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
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.
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…
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