i haven’t been getting much enjoyment out of my new hobbies recently. i did attempt to do a decent winged liner about three times yesterday. i have these stencils a friend gave me and i had some new liquid liner. i was not successful and just put stuff away rather than putting on any make up. i’ve got most of the songs for my next mix gathered up but haven’t worked on it hardly at all. i’m reading a book my friend wrote and giving editing suggestions as i go but i can only read so much at a time on the computer and i think even the day to day breaks are making it hard to keep the story straight.
if you haven’t noticed yet, this will be a whiny woe-is-me post.
there are things i’m clearly not allowed to say or talk about. i have all of one person in my life who understands at all what i am going through with this terminal illness thing that has become my life. i have a friend who has been through this and come out the other side with her new lungs but i feel that nagging guilt when the taboo things slip out. she’s pretty awesome and i’m certain if it weren’t for the distance between us we would be hanging out all the time. still. i don’t want to be that person you barely know always saying what no one wants to hear.
i’m going through what i hope is just a temporary set back. a little over a week ago i was barely needing oxygen. well, i may have needed more than i was using if i constantly watched my numbers with my oximeter but i used what i felt i needed, i felt good and i was able to comfortably go out and about with small tanks and they lasted a good while. then at rehab one day i noticed what i was using was not quite enough. i felt it and saw it on paper as i recorded my numbers. it was subtle. after a couple days i told my husband. i don’t like to worry him for no reason. it might have just been a bad day. after a couple more days i was turning up my oxygen at home but the machine i had only went to 5 liters so when i was using that much and my numbers were not where they should have been i started to worry a little. i did all the things i’m supposed to do in these situations. i worried something was wrong, that my illness was progressing. then there was a nightmare game of please-give-me-the-equipment-i-need to meet my oxygen needs. it was the worst game ever and i almost gave up and just resigned myself to adapting until things improved but that idea just made me even more anxious. in between phases of panic i reminded myself that my family dr cleared me. he saw no sign of infection and my x ray was unchanged. nothing was clearly and visibly wrong aside from needing more oxygen.
yesterday things were finally dealt with. they brought me the bigger machine i needed and took away the home fill system i had been using and replaced my small tanks with big huge ones that i need a cart to roll around when i go out. it was a sad and depressing thing for me. it feels a little like failure for me when this happens. maybe i didn’t exercise enough. maybe i cheated on my diet more than i should have. maybe i wasn’t using enough oxygen and that was the cause. i always feel like i must have something wrong. my far off friend had just very recently told me to be sure to “live it up” while i was doing so well. did i? or did i take that ‘good health’ for granted?
i absolutely hate using these large tanks. the cart is difficult to load in the car, its heavy and awkward and it wears me out for a minute and slows me down. being slowed down makes me feel like such a pain in the ass when i’m out with my husband. he has to wait for me to lug the thing into the car and get my seat belt on before he can start driving. then the reverse process before we can get out of the car. i rush and then struggle to catch my breath and then we get in the store and we have to put this huge ass tank-cart-thing in the shopping cart. it takes up so much space and by the time we get to the checkout the cart is overflowing.
yes i am whining about this relatively minor inconvenience that other people in my situation would be grateful to be in. they need even more oxygen. a cart that holds two of these huge tanks and extra tanks in the car with them when they go out or they need so much they can barely go do anything. they need much more even when just sitting doing nothing. they have to deal with the discomfort of so much air rushing in through the cannula in their nose. people in my situation are turned away and not able to even get a transplant. they don’t have enough emotional/physical support to get through it or they are too sick or too old or they can’t get their weight down or they can’t afford it. they don’t even have the hope of a second chance.
i feel so much sadness for these people. i know i am fortunate and i should be grateful and i am, i truly am.
but this shit sucks. so often i find myself dealing with all of this oxygen tubing and just wanting to cry. i don’t. usually. but i have those moments where i become far too aware of just how sick i am. i already struggle to get a decent amount of sleep but when i fall back like this my anxiety jumps and evening wears on and my anxiety tells me i’m not gonna sleep. i’m going to toss and turn in a panic that i’m dying faster all of a sudden. what if i never get back to where i can use those small tanks again? what if it gets worse and my drs freak out and make me go to the hospital? what if i never get the call? i fight back the tears. i push away the scary thoughts. i try to push away the guilt.
then there are the things i can’t say. the things i’m not allowed to talk about. resulting in isolation and being trapped alone with my fears and worries.
i want and try to protect everyone from the sad facts of my illness but i’m just not that tough, i’m not that strong, i’m not that brave. it is strange for me when people say that i am. people say i’m inspiring. they say i look really good. i’m not. i’m none of these things.
i’m overcome with guilt.