Golly gosh, it’s been a while, largely because I was admitted into hospital on the 31st January and I’m still here 38 days later.
That’s technically a lie, I’ve had to change hospitals since then because this current one has a specialist dermatology ward where the other does not.
So, yes, I have vssculitis, it affected my skin and now all my skin is rotting off my body. Most of it has healed rather well, mostly over my legs, which is great. Just my arms taking their sweet ass time.
But enough about the gory horrors, I want to talk about my feelings and how they come and go so quickly.
I have entire days where I just feel so sad and all I want to do is cry and cry but then the nurses tell me to stop crying and then I just feel so angry, I’m so angry at these nurses invalidating my pain and I just want to tell them where to go sometimes. But I don’t. Because that would be rude and they’re doing the best they can.
My nurse today is definitely, er, one of the sterner nurses. Which is fine, she’s no nonsense and maybe some people need that but I need a soft approach.
And then I feel angry that this has happened to me and I’m so angry at my lot in life, I miss work and being at home but instead I’m stuck in this room aside from the occasional walks to the bathroom.
And then I’m angry at the sheer amount of pointy bits, daily blood thinner injections, blood sugar tests and then there’s the biweekly blood tests. I just want to say “no! No more!” But I can’t. I am pissed that the blood test lady came yesterday despite the doctors agreeing my next test will be today. She didn’t get any blood out of me. I told her so.
And then there are times like today where mood wise I feel mostly fine and then I just burst into tears out of nowhere and nothing seems to trigger it and then it goes as quickly as it came. I don’t know. I’m probably depressed.
I want to go home. I can’t. I’m in pain all the frigging time. I can’t do the things I enjoy because I don’t have the strength or dexterity in my hands.
I’m leaking pus from all my joints no matter how well they bandage me up and it smells and it is disgusting and I’m disgusting and I’m so sad.