being disabled sucks

Being disabled sucks

I had wanted to try the bus routes to see my pain doc today but I woke up really tired despite sleeping ok. I went to pee and took my meds then went back for a nap. I woke up more tired than I did before. I should have stayed up. I had messages from the pain doc when I got up. She has an availability on Monday and they wanted to know if I could see her then.  I thought of all the bus rides and said fuck it, I will take an Uber there even though it is going to cost me close to $100 round trip.

I had my coffee and some cake that my sister made. It was a good lemon cake. I love lemon cake.

I had therapy yesterday, an urgent session. I was feeling overwhelmed with talking to the palliative social worker the other day. Pain has been bad and I had posted that I wanted to die on Twitter. A dear friend in South Africa sent me a message yesterday morning saying that he needs me. Told my therapist and she asked how I felt. I don’t really know how I felt or how I answered. It felt kind of good but in a burdensome way. It made me think about who I was leaving behind. I am just so damn tired of being tired and in pain every single day. I need a nap in the afternoon to function, and for what? Not like I have a job or anything to commit myself to. Most of the time I have doctors appointments and therapy. It’s a juggling act. I have been trying to schedule a study blood draw for the past three weeks and the time keeps changing because I am too tired to go into town. I don’t know if this is part of Covid just making life worse for me or not. I just know I want to fucking die. Been saying this for years but survivors guilt is real. I don’t know why suicide holds a different kind of grieving process over natural or cancer death. It is interesting how it is viewed. Most people refuse to accept it and have said that the mental illness is what killed them. Chronic pain and depression is what is killing me. Being disabled doesn’t have its perks. Covid hasn’t helped matters as I rarely go out these days.

I was thinking about how fucking stupid a urine “pain management” screen is for someone on opiates of the highest caliber. The drug I take doesn’t register on the panel. That is why it is stupid so if my doc wants to make sure I am taking my meds, she will have to order something else.

I will be taking my night meds soon. Ballgame starts about the time I plan on taking them. I am really tired because I didn’t nap this afternoon. I slept in so couldn’t really rest. I tried but my bladder said no no no. I haven’t been drinking as much as I should yet my kidneys still function. I think they over function to be honest but there isn’t a test for that. I output a good volume when I cath versus when I void. I don’t know if the “new” uro meds are doing anything. I know it has been hard trying to take the one three time a day and the other on a full stomach because I don’t eat that great most days. I am usually eating ok the first two weeks I go shopping and then I am out of stuff and just can’t make dinner or lunch.

I hate spring time because of the blooms. Some scent has been in my room on high pollen days and I am sniffeling all day. Chronic Rhinitis is the medical term. I have to use flonase or sniff sniff. Works in a few days time. But I hate sniffing the stuff to make my nose feel better. Stuff is nasty at the back of my throat. Sucks.

One thought on “being disabled sucks

  1. chronic rhinitis sucks!
    I’m so sorry you have survivors guilt, its just such a tough spot to be in! You want to die and you are feeling sad for those you leave behind. I understand. Xx


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