muldoon: octavia 1 (Default)
[personal profile] muldoon
 1. it's not just going to disappear. i'm not going to wake up one day and feel like i've never been ill, like i've never felt constant pain or daily struggle. it's going to take medication. it's going to take hospital stays. it's going to take countless doctor visits and blood tests. it's going to take a long time, a very long time, and i'm gonna go through different meds like a guinea pig on a drug trial before i begin to feel better; before i begin to see any improvements. so stop expecting me to wake up one day and be okay. 

2. i'm sorry i had to cancel our plans at such last minute. really, i'm sorry, and i didn't expect it either. but when you live with a chronic illness, that's life. things can take unexpected turns. a good day may turn into a bad night; a phone call to my specialist to see if maybe i should check into hospital or not for a few days. it's not because i don't want to hang out with you, because, trust me, i'd rather spend a day out in the pouring rain with you than stuck in the bathroom crying all day. 

3. there isn't a cure. and even the one thing that's seen as a cure — getting my colon removed and replaced with a bag — isn't a cure, because it can spread, and it can come back to bite me in the ass, literally, a second time around. so if you ever find me alone at midnight, crying, or in a depressed slump for a little while, it's not because i'm grumpy, it's because sometimes it hits me that i'll have to live with this disease for the rest of my life. and that's okay, i guess. i'm used to it. it's part of me now. but sometimes that can be a rather dull concept to grasp. and sometimes that might make me a little sad. 

4. some days are better than others. some days i could run a mile, if my asthma would allow me, or chase butterflies in the wind and follow a storm. some days i can smile without forcing it. some days i can eat that entire chinese takeaway without any regrets afterwards, and maybe some of that popcorn and milkshake too. but some days i can't, and i don't know which of those days is going to be tomorrow. but just because i'm okay today, don't expect me to be okay tomorrow - i might just let you down.

5. i'm sorry i disappeared for days. this is especially for the long distance friends, the ones who have always had my back. i'm sorry if i disappear from the world wide web for a day, maybe even a week. sometimes this disease takes a hold of me, and it doesn't let me out of its grasp for a good while. i'll be screaming, i'll be squirming, i'll be lying in a bed of tears and pain. sometimes it knocks me out for a while, and my only reality is swallowing pills and sleeping the rest of the day a way. i'm not ignoring you, i promise, i'm just trying to get well enough so i can spend tomorrow with you. 

6. i'm not a druggie. i don't know why, but i get this one a lot. the pills don't make me rattle. they don't make me shake. i wouldn't be okay without them, but please don't give me that look when i pick up my prescription from the local pharmacy. don't tell me i'm wasting government resources. don't look down on me when i have to take some of those nineteen pills out in public because i'm out for the day and if i don't i'll get sick. just don't, okay?

7. i've had to give up a lot of the things that i love. this august, i planned to go to college - and i was really looking forward to it. i had applied, gotten an unconditional offer, received my PVG disclosure which would allow to work with young children, and i couldn't be any happier about finally being able to do what i love. but, unfortunately, i've had to cancel those plans. i'm starting new medication soon, and it's a form of 'chemo' this drug as it can also be used to help with cancer, and i know that there'll be horrible side effects for a while; side effects that will stick me in my bed for a few weeks and make me want to give up all together. i also can't plan fun days out with my family anymore. i used to love going out with my nephews, taking them out to the park or the local soft play, maybe even swimming. but these days i can't do that, at least not quite yet. i'm just not well enough. and it sucks. and i miss it. but maybe i'll get back to doing those things one day.

8. every activity is suddenly a lot harder to perform than it used to be. i have to sit down to brush my teeth. i have to sit down in the bath if i want to have a shower instead of a bubble bath, because the steam makes me dizzy and the exertion of standing under the water is too much. walking up the stairs - sixteen bloody steps - exhausts me, something i used to be able to do in seconds multiple times a day is now something i dread. making breakfast and lunch requires a break between slicing pieces of bread. feeding the dog or guinea pigs exhausts me. doing chores exhausts me. making my mum a coffee or tea exhausts me. cleaning the house could send me down for a five hour nap. reaching across the livingroom to grab the tv remote is a struggle itself. i'm not being lazy, trust me, i'm not. i'd oddly love to be able to help around the house and do all of these things, take care of myself and water the plants in the garden. but it's too hard now. and i don't know when it'll be easy again. so don't expect too much from me. 

9. having this disease has made me realise that there's a lot of people out there that love me. despite the symptoms of ulcerative colitis, and the fact that a large proportion of sufferers have to deal with depression due to chemical imbalance; i'm actually happier than i was before i first got sick. and that's not because of the fluoxetine, at least i don't think it is, it's because of the people i surround myself with. my mother has been incredibly helpful, my sister incredibly kind. my friends haven't turned their backs on me, and distant relatives who i thought never gave two shits about me (because honestly, we've met probably once in our lifetimes) have decorated custom cards and sent them to my house. my neighbours have left presents, cards, bubble baths and soft, cuddly toys to give me comfort. even people i don't know have been asking my parents, "how is she today?" a lot of people care about me. and without this disease, i probably wouldn't have realised that. i used to be able to count the people i thought loved me on my fingertips — now i don't even have enough bones to count them all on. and i'd like to say thank you to every single one of you. i love you. and you make fighting this disease a hell of an easier battle. 

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muldoon: octavia 1 (Default)

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