Chronic Fatigue

I had a total crap Sunday. Slept from 6 pm until 7 am this morning. Only woke up bc the wife made breakfast before she went to work. I hate that she does everything and I get one day a week where I feel like I have contributed something around the house/yard. I am extremely tired and frustrated. I hope I can work my 3 days this week. #RelapsingPolychondritis #ChronicFatigue #PsoriaticArthritis #Psoriasis #PeripheralNeuropathy

Due to my chronic illness and disability i had to drop out of university and i moved back to my parents. All the people i used to know moved away or i lost touch with them. I don’t have any friends anymore but it’s also quite difficult to meet new ones. I have really bad fatigue and can’t leave the house much. Any ideas and suggestions? How did you meet people ? #ChronicFatigue #FND

I feel hopeless. Sometimes i feel so alone, i get desperate. I feel like i'm always feeling bad and I think that the people around me are tired of me or they pretend that everything is fine. But i'm collapsing inside. I've made so many changes in my life lately, and if I think about that I'm happy and satisfied, but then there are moments when I still sink into a black hole and i feel so sad. Then I think that people of my age shouldn't have these thoughts, they should enjoy life, but I can't and i'm wasting these years without being able to enjoy the good things. I am surrounded by beautiful things, and I will graduate next month, and I have dedicated my whole life to this goal. But now it's like I don't care that much anymore. This thing scares me. I know I have to be less hard on myself, but I feel like a disappointment #EhlersDanlosSyndrome #EDS #Loneliness #MentalHealth #ChronicIllness #ChronicFatigue #ChronicPain #Trauma #DistractMe #CheckInWithMe #Depression #Anxiety #Grief #SocialAnxiety #MightyTogether

You may appear well to wandering eyes,Yet fibromyalgia wears its mask in silent disguise. Not all pain is visible. Be kind — always.

#Fibromyalgia #ChronicFatigue #ChronicPain #InvisibleIllness #bekindalways

To most people—those outside this community, those who don’t understand—my three tasks today sound ridiculous. Simple. Easy. But to they were mountains.Brain fog choked me. My body wouldn’t settle—restless, aching, screaming no. I couldn’t think straight, couldn’t move without fighting myself. Then work stopped. A storm rolled in—loud, messy, real rain, not some gentle drizzle. When it passed, the fog lifted just enough. I grabbed that moment, tackled my tasks, and got them done before the haze crashed back.Three things. Small to some, massive to me. I did them. And for that, I’m #thankful #gratitude.If you get this fight, I see you. We keep pushing. 🙏

I want to crawl out of my body and find another. One that likes me. I want to feel like I am me. I want a mind that isn't a stone with cracks barley large enough for a thought to squeeze through. I want to be free.

Had to work anyway. It is what it is folks. Push through and kick @$$ anyway! #RelapsingPolychondritis #ChronicFatigue #ChronicPain

I’m so tired today and had to go to work. It is what it is folks! We push through and kick ass anyway. #RelapsingPolychondritis #ChronicFatigue #ChronicPain

I’ve spent a lifetime learning how to endure.
Endure the pain that locks my joints, edure the judgment that follows when I walk without a cane, then use one moments or days later.
Endure the silence that creeps in after I advocate for myself or my daughter.
Endure the way people smile at me with pity or worse with suspicion.

I’ve heard whispers and accusations since I was a child. That I was faking and that I wanted attention. I was lazy and I was too sensitive or depressed. That I needed to pull up my boot straps and push through, and of course I believed them.
I internalized the idea that my pain was too much for people to care about, that my worth was tied to how well I could perform as being "normal" and how much my "normal" body could do. So I learned to hide my pain and I learned to shrink myself in order to be accepted and fit in.

But as I grew pain has taught me how to listen deeper. Becoming a mother has taught me how to fight louder and surviving has taught me I don’t owe anyone proof of my pain.

I’m disabled and a mother to a fierce, magical little girl. She has epilepsy, kidney disease, and the most radiant heart and light I’ve ever known. She is the reason I rise when I’d rather disappear. She is the reason I advocate even when my voice shakes and she is the reason I stay soft in a world that hardens people like us.

Raising her with a body that betrays me daily is a lesson in adaptation. Every task from bathing her, making meals or getting out the door requires calculations most people never think about. Some days I can pass as functional, and some days I can barely lift my arms, but every day I am her safe place.
That’s the most important job I’ll ever have and one I cherish daily.

We live in a world that asks disabled people to justify our existence and a world where medical care is rationed. Where accessibility is treated like charity and not a right and where even family can become a battlefield of misunderstanding and cruelty. I know what it feels like to be gaslit by loved ones and I know the heartbreak of being tolerated instead of embraced.
I’ve felt invisible at family gatherings and I’ve smiled through tears so my daughter wouldn’t see how shattered I was.

But I’m not here to center the pain of being misunderstood, I’m here to name it so I can set it down.

I’ve learned that my voice is sacred and that rest is resistance. That saying “no” is necessary and protecting my peace is a priority for me. I’ve also learned that boundaries don’t make me mean, they set me free and demand the way I deserve to be treated.

If you’ve ever been made to feel like a burden, you're not, if you’ve ever mourned the loss of people who chose judgment over love, let them go. And if you’re building a life inside limitations please know that beauty grows there too.

I write to remember who I am and who I desire to become.
I write so my daughter can see her own worth and so she does not shrink herself, but blooms over and over again.
I write so others don’t have to feel as alone as I did.

Disability does shape how I move through the world, with tenderness, awareness and empathy.

If my story resonates with you, please know that you are worthy, you are not a fraud and you don’t have become small to be loved.
You don’t owe anyone your pain, but you can turn it into something powerful, whatever that means for you.

All my love, Mighty warriors 🤍

#Disability #JuvenileRheumatoidArthritis #ChronicFatigue #Lupus #MentalHealth