Interesting saying. For others.
Spring has come and has brought flowers, colors and warmth.
Just that warmth that leads to rest, which you feel like a light cover, like a cuddle.
Oh yes … sweet sleep … ah, how wonderful it would be if this saying fit every narcoleptic.
If the severe fatigue, so difficult to accept, it was instead sweet before turning into a peaceful sleep.
If the sweet sleep finally brought rest, beautiful dreams and such relaxation as to make you say, as soon as you wake up, “Ahhhhh what a good sleep !!!”
But no … not at all.
Sweet sleep for others, not for you.
For you is a little more weight on your shoulders, the change of season that puts you to the test, the brighter days that you regret wasting sleeping, the warmth that instead of warming you up tires you, more …
April sweet sleep, screw that!
For me, narcoleptic, April is a month like any other, just a little more annoying.
Because it puts you in front of choices that in winter are easier to take, in the cold and the dark … because it makes you angry to see that nature is reborn while you are still and you don’t have the strength to stay awake even to admire it, at any moment you would like , from the window.
Annoying because your limits are thrown in your face, because people start asking you “why don’t you go out with this beautiful day?” And you no longer want to explain to him that now is not the time, that you are exhausted, that you could fall asleep while walking or while drinking juice at the bar, and that is better if you rest for a while to recover some energy.
And, inevitably, the comment X arrives, what narcoleptics have heard at least a thousand times and that never fails: “But how can you always be tired if you sleep continuously? Go out, or you will get depressed. ”
Here … if you are not narcoleptic that is a comment that may seem harmless, even supportive but if, like me, you have this disease is the worst thing you can hear.
At that moment you are embarrassing a sick person who has two choices to choose between: explaining why he sleeps so much and that, no, it is not a choice.
Or ignore your question, to be polite and avoid having to justify yourself and perhaps run into unpleasant discussions.
Either way, screw it, gentlemen!
Because I also have the eyes to see the wonder of certain days, and the nose to feel the scent of the air that changes and warms you.
I would like to run and enjoy spring like others, but I still can’t.
Because Narcolepsy with cataplexy is still a limit for me.
I can no longer drive, because I suddenly fall asleep and muscle weakness causes my head and arms to fall, or my legs to collapse. I could cause a car accident, kill someone.
I can’t go out alone, because I fall, I often get hurt, and falling asleep everywhere causes the risk of being robbed or run over.
I can’t cook using fires (or induction), like everyone else, because more than once I burned myself falling asleep on the stove, or cutting myself while using a knife.
There are many things I can not do and unfortunately, until the treatments give some feedback, my sleep is so deep that nobody can wake me up.
Sleeping Beauty practically.
But there are also many things I can do!
When I am alone in the house, I have found ingenious solutions to take care of me and be happy.
I can go out and enjoy everything, if there is someone with me who is aware of my condition and who is so great to not be ashamed if I fall asleep at dinner or while walking.
I can cook delicious and always fresh things, without gorging myself on microwaved food or take away, using a food processor that cuts, cooks and mixes for me.
I can enjoy nature resting on the terrace, which I have equipped with super soft armchairs and a heating lamp for the windy days.
I can train through online courses, doing my exercises on a soft carpet, perfect in case of a nap.
I can avoid hitting my head on the floor or on the table in case of cataplexy, putting a stuffed pillow on my head. Awful, but brilliant.
I can write, tell my life and help many people.
Well… sayings, advices and popular wisdom make you smile, of course.
But also reflect.
And if “April sweet sleep” does not suit a narcoleptic very much, try to help us by lifting at least the weight of the advice.
Because being limited is already heavy to accept, having to justify one’s illness also becomes painful.
Rather, invite us to go out and have a drink, certain that if we fall asleep, you will have an epic story to tell your friends and an extra person who will thank you for taking the risk of being considered the friend of the strange one, the one who sleeps while talking.
Because Narcolepsy is like Christmas… when it’s time it comes… but friends don’t… the real ones, once they arrive, they stay.
And if being narcoleptic made me review things and ways to live them, it gave me the certainty of having special people at my side, who are not afraid to laugh WITH ME of my bizarre naps, but never make fun OF ME.
April or not, this is certainly a fantastic reason for a sweet sleep.