Top Tweets for #severepots
But then again, my immune system would probably have found other ways to attack healthy stuff. 3/3
#severePOTS #autoimmunity
I have to use whatever is left of my life to prove to the government and disability services that there's practically nothing left of my life. 1/2
#severeME #severePOTS etc
It's trivial compared to the physical suffering I usually feel, but I miss wearing daytime clothes. When I see pictures of people online wearing regular clothes, I sometimes fantasize about what I would wear and who I would be.
#severeME #severePOTS
It's confronting to see who I was before I became this ill. My illness takes almost everything now. I'm not sure what's left of the person I once was. 2/2
#severeME #severePOTS
@NeleHelena So sorry, Nele @NeleHelena, that you are suffering so much and bedbound. Hoping for something good to happen for you.
#severeME #severePOTS
The days are so long when you can't do anything but also can't rest because of the adrenaline while being bedbound. It's just me, my room and all my physical suffering. Time goes by way too slowly while suffering this much 😞
#severeME #severePOTS
Don't get me wrong, if my suffering were any less while still being bedbound, that would be my biggest problem. But most of the time, the physical suffering is so overwhelming that there's no room to have feelings about that.
#severeME #severePOTS etc
It scares me so much that my parents, who are my carers, are getting older and will need care themselves instead of being able to care for me. There's no alternative that wouldn't make me decline further. And my physical suffering is already unbearable.
#severeME #severePOTS etc
From now on, I'll only make decisions on my worst days, which are pretty standard anyway. Because on a good day (still bedbound but with less physical suffering) I overestimate what I can tolerate.
Not just me of course, we all tend to do this.
#severeME
#severePOTS
We're severely chronically ill in a way society doesn't know and doesn't believe exists. That's scary.
#severeME #severePOTS etc
One of the loneliest things is knowing what bodies can do, what kind of unbearable physical suffering there exists without you dying from it.
#severeME #severePOTS etc
Everytime my illness declined it was permanent. But it feels like that's such a taboo to say in our community. People only want to hear about people that have improvements.
#severePOTS
#MEcfs
#autoimmunity
Sometimes I feel the need to tweet about the things I feel about this life with severe illness. But then I have no idea what to say because it's all too overwhelming and depressing and I've already tweeted once about most of the things I want to say.
#severeME
#severePOTS
Since I'm severely chronically ill all my energy goes to short-term decisions and arraging those things. Those are already so hard so there's no room left for long-term decisions. I'm putting all my energy into getting through the day in bed, while
1/2
#severeME
#severePOTS
etc
If I ever die because of this illness, you don't have to use my death to tell people how horrible those illnesses are. You can use my life.
#severeME
#severePOTS
If you come to me with "look at the bright side" stuff, that will make me very unhappy. While usually, I'm not unhappy. Be angry with me together, and I'll be happy.
These are the people I match with. We're angry, sad, funny and happy. 2/2
#severeME #severePOTS
My 2023 wrapped:
Days spent in bed: 365
Days in unbearable physical suffering: 365
Times I left the house: 2 (doctor and dentist)
People I've seen who aren't a doctor or a carer: 1
Nights with insomnia: 365
#severeME #severePOTS
"You probably rest a lot?"
No. I never rest. I'm bedbound. I lie down and I suffer. I'm sick you know, it's not a lazy sunday. It's writhing, tossing and turning in bed due to unbearable physical suffering.
#severeME #severePOTS etc
Two years in an unbearable adrenaline rush today.
And I don't mean that I'm having adrenaline rushes for two years. It's one big ongoing rush for two years now.
The side effects of a short but very high course of steroids never went away.
#severeME #severePOTS
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