Disclamer - I am not looking for sympathy, and I am in no way saying 'look how awful my life is'. This is just an accurate representation of what an average day is like for me. I am in no way saying this is how everyone with any chronic illness feels, as every individual has a different experience. Some days are much better than this and some days are a lot, lot worse. Every day, every hour is different. To read more about my official diagnosis, check out my About Me page.
9-10am. You wake up feeling like you've been out drinking and partying all night. But you didn't even leave the house yesterday, and you've not had a sip of alcohol for months. Your head's pounding and you know you need water and painkillers, but you feel like your brain is going to explode if you even contemplate sitting up. But you force yourself to. If you go back to sleep and lay in too long, you'll just feel even worse.
You decide not to take strong painkillers. The thoughts of "addiction" and dependency enter your head, and there's a chance they might stop working so well if you take them too often. So you go without. But it puts you in a bad mood and you still have to take 8 other tablets anyway.
Getting out of bed instantly sends your head spinning. You feel like all the bloods draining from your head. You can feel your pulse skyrocketing and if you try to walk, the room suddenly spins from underneath you and you grab onto the wall to stop from falling over.
You feel too sick to eat, but you know you need food to line your stomach. You go downstairs and start making breakfast. Sitting down at the table, you feel an instant relief. You begin to eat even though every bite makes you feel more and more nauseous. You feel like you've already eaten ten meals this morning. Bending down to put it in the the dishwasher sends your head pounding, and you can barely hold a conversation with anyone.
Washing is exhausting. As you walk past the bathroom you notice a bath already run. Thank god. You can sit down for a bit in it. At least there's ten/twenty minutes of relief. You contemplate sitting on the toilet seat whilst you brush your teeth so you don't have to stand.
Putting clothes on makes you feel dizzy. No makeup. And hair goes in a ponytail. There's no point forcing yourself to pick a fancy outfit and wasting makeup and spending an hour standing and doing your hair. Save that for when you're actually going somewhere. You're already exhausted.
11-12pm. You need a rest after this mornings activity. You sit on your bed and lay still for a while, and after a minute you finally feel your heart rate begin to slow. You watch some youtube videos, and start to plan your day. On a good day, you could be going to class, or going out for a little bit of shopping or lunch, but you know any plans for the day are out the window. Theres so much you could be doing, but you're not up to standing right now, never mind leaving the house.
You have to remember to focus on the things you can do. You try to reassure yourself it's okay to rest when you need to.
11-12pm. You need a rest after this mornings activity. You sit on your bed and lay still for a while, and after a minute you finally feel your heart rate begin to slow. You watch some youtube videos, and start to plan your day. On a good day, you could be going to class, or going out for a little bit of shopping or lunch, but you know any plans for the day are out the window. Theres so much you could be doing, but you're not up to standing right now, never mind leaving the house.
You have to remember to focus on the things you can do. You try to reassure yourself it's okay to rest when you need to.
1-2pm. You should probably have something else to eat. You psych yourself up again, and make your way back downstairs. You pick out some carby plain stuff, nothing that requires much preparation. You've figured out all sorts of tips and tricks to help save energy and stop you feeling worse than you already do. You then do a few chores, emptying the dishwasher, cleaning the bathroom, tidying your room. You zone off into your own little world.
You go back up to lay on your bed. You read for a bit, you plan a blogpost, you plan some art in your sketchbook. Your pain levels have gone up. Your art stuff sits on your desk, but you won't be up to painting unless you get some strong painkillers in you. It plays on your mind - do you just lay still and go without, or do you take them and attempt to do something? Finally, you give in. You know you'll feel a bit better once they're in your system anyway.
You go back up to lay on your bed. You read for a bit, you plan a blogpost, you plan some art in your sketchbook. Your pain levels have gone up. Your art stuff sits on your desk, but you won't be up to painting unless you get some strong painkillers in you. It plays on your mind - do you just lay still and go without, or do you take them and attempt to do something? Finally, you give in. You know you'll feel a bit better once they're in your system anyway.
3pm. You have a good couple of hours. The pain subsides a little, the brain fog lifts and you manage to get an hour and a half of painting in. It brightens your mood considerably. With a bit more motivation you go downstairs. You lay on the sofa with your dog and read for a bit. You sometimes have dinner up in bed if you really feel rubbish, but you can manage sitting at the table for a bit today. Also, going up and down the stairs too many times will set your heart racing and will bring your headache back to that unbearable level again. You're cold, of course you forgot to bring a jumper down, and your body is terrible at regulating your temperature.
7-8pm. You finally get ready for bed. Showering and brushing your teeth sends the pain levels up again, and the medication is already wearing off. You can't wait to get under the covers, warm up, take another 8 tablets, and watch some TV without having to move again. The absolute relief you feel as you lay flat again is wonderful. You feel like you've run a marathon as your body is throbbing and aching. But technically, you had a good day.
And tomorrow, it starts all over again.
And tomorrow, it starts all over again.
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