Everyday I wake up and peel my eyes open coated by the crusty layer of sleep formed in the night. Depending on how difficult it is to wake up, I know how my day will be.
On good days waking up isn’t too hard. Sure, it takes me a while as it does any chronic illness sufferer but some days are worse than others. Some days I’m unpleasantly awoken by the crushing sensation of pain running through every fibre of my body. Other days I’m awoken by the over whelming urge to hurl, there and then. And then there are days I feel like nothing could awaken me from my deep slumber, riddled with fatigue.
But it doesn’t matter how I feel.
I get up, slowly. I place both feet on the ground and wait from my heart rate to settle before making my way to the bathroom.
Now, have you ever heard that saying; ‘not all disabilities are visible’? Yes? Well, that might certainly be the case but I tell you now. Sometimes, I look like a zombie, ripe from creation. There are some days I worry that my eye bags are literally going to drop below my chin.
So I’m up, kind of, and I get dressed. It’s a must. I make myself, no matter how tiring or painful. I have to. Each day delivering a new set of tasks to my door, I have to plan out in my mind what I’m going to do through the day in order to survive the day after. If I happen to have something big coming up, I have to limit myself to how much I do a couple days before in preparation. It all gets a bit hectic really, so a lot of the time I have to play it by ear.
I can plan whatever I want in the days coming, weeks, even months but there is no guarantee I’ll be attending. Cancelling plans is, although heart breaking and annoying as heck, necessary.
Basically, what happens is I know I have college on so and so days so I plan out my resting days. If my resting days are somehow interfered, I either suffer the consequences or cancel my other plans I had spare that week. It sucks, and as a 16 year old I shouldn’t have to but it’s the only way I stay together half the time. Although, saying that, there are periods of time, short and long, where I don’t have to think as carefully as I should which normally ends me back in the shitter. I know, I should have learnt by now, even though most the time when going through a good period I’m reasonably good with my actions. However sometimes I get so used to not feeling the consequence of every action and not feeling as bad as I did before, I forget that I’m ill and spontaneously turn into Super Woman.
Like I mentioned before, pain varies and normally riddles my every movement as soon as I wake up. The ache is like a flaming fire through every last inch of my body, and the sharp pain; a knife carving its way through my skin, tissue. Bone.
I’ve just learnt that each day is kind of like seeing if you won the lottery in a sense. You scratch away at the card and then proceed to view your numbers, which for me is waking up. Some days I win a tenner, it’s something but nothing worth getting excited over. Other times I win a hundred pounds and its enough to get excited about but you have to be careful that you don’t blow through it too quickly. Winning a thousand quid makes you really excited and can last you a fair while, you just have to be careful you don’t lose your money. And finally, yes that’s it, the awaited jackpot. You can do what you like, spend it on what you like and not have care in the world other than looking after what you happen to have gained that day. I live for those days, they’re amazing when such an rarity comes along.
It’s not how I’d choose to spend my life but I guess, in many ways, living each day in hope of my own personal jackpot, I appreciate it when my numbers match up. I don’t take any of it for granted, not a single minute of it. So although they don’t come that often, when they do, I sure as hell make sure I make the most of it. It’s another day in the long, long journey of learning to dance in the rain.