haunted by the girl i used to be

by kaleidegirl

i’m so very tired. getting out of bed is harder than it used to be. i don’t know what is going on. i don’t think i ever had so much trouble with getting up and waking up before. maybe it has just been a long time. memory is funny for me that way. reality and remembering aren’t always the same. like how i don’t know if my breathing is on the decline or i has it been this hard all this time and i just started moving too fast thinking i was doing better than i actually am. i haven’t really been checking my O2 levels since i discovered one of my oximeters was off by 4% or so. maybe the fact that i can use less O2 comfortably while walking through the grocery store has made me think i am doing better than i am. but then there is the whole suddenly needing my O2 at rest and at night. this whole needing more oxygen thing is pretty scary. i mean, am i sick or are my lungs just suddenly failing or is this just a late bad reaction to the latest prednisone taper? i assumed it wasn’t the prednisone taper because i totally didn’t take my pills Sunday morning and was fine. i was fine until Monday night. that was when i started needing it at night. i wasn’t sure that was the cause of my restlessness until a lady at rehab mentioned having the same issue and the fact that i got to sleep fine last night with it and i didn’t have to try all the meds i thought would help. more serequel because i hadn’t taken the full dose for the day and my new psych dr had said i may find myself needing more while on such a low dose. nyquil because that always helps me sleep. norco because i always have a headache and had taken it for a couple days in a row. i thought maybe it was withdrawal somehow. i was baffled and desperate. so yeah. i used my oxygen last night at just 2L and i slept fine. maybe too fine with how hard it was to get up. now i am wondering, do i message my dr at U of M? do i just hope it gets better by the time i see her on the 30th? i mean, what can she really do aside from adjusting my prednisone dose and hoping that helps? as it is i’m afraid to taper down to 10mg which is, i think, where she wants me to maybe stay at once i get to it. i don’t even know. i don’t even know if i should be using 6L instead of 4 while getting about the house. do i start using my flow control valve so i can use it at the lower setting while at rest if i need it at 6 to get around better? someone tell me what to do because all i do know is that i hate being reminded so often how sick i am. i want to see my daughter but i’m afraid she will avoid me even more if i am not just sick but needing my oxygen while just sitting. i think, like me, she doesn’t like reminders like me needing more oxygen reminding us that i am sick. i am in fact mortal.

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