Why My son doesn’t sleep!
Unsure of where to start with this one but it has become quite apparent lately that most people are ignorant, self-righteous and plain arrogant about the things we have to deal with on a day to day bases . . . I know their hearts are in a somewhat right place with their advice and points of view but honestly I have had enough of people’s judgmental attitudes towards the conditions of my children and how I am forced to parent them. So here goes .
It is an incredibly lonely in our world, as others struggle to comprehend the extent of the conditions they both have. I am on my own in raising them but more so isolated by others not understanding the extend or seriousness of our everyday battle to survive. Today I just want to express about my oldest son – Son 1 . . .
Son 1 has an exceptionally rare condition called “Non-24 circadian rhythm disorder – sighted” or they call it Non-24 for short and some times N24. It is very rare for sighted people to have this condition but it is REAL!!
Basically my son does not have the normal sleep chemicals and hormones released into his system each day like everyone else. This means that every 36 to 42 hours he may and I will stress the word MAY get a burst of circadian that will make him extremely sleepy but until then he has no hope of a proper sleep, once asleep (finally) he will dream and says it feels like he is actually sleeping . . . but the brain waves show another story as he is unable to fall into a deep sleep – so says the doctors and many machines he has been hooked up to over the years. . . .
Try to imagine how frustrated you are after being awake for 20 hours straight and then imagine you can feel your body is exhausted but you still can’t sit still . . . you can try to close your eyes but you just can’t sleep . . . you know you need to and you so badly want to but something is stopping you like you have drunk 30 coffees in the last 5 hours, your body is buzzing with exhaustion but it just won’t switch off. . . now imagine living EVERY DAY of your life like this. . . . Not every now and then BUT every fucking day of your life!!
But wait there is more. . now because he has not slept enough his whole life, 18 years and counting, through all the major life changing experiences- like growing taller, going through puberty his body has missed out on major chemicals and hormones that are released each night as we sleep . . . the long term effects of this is clear with serious short term memory loss, learning difficulties and anxiety as the body has been in constant fight or flight mode from not sleeping enough . . . His poor body, mind and soul is constantly exhausted and yet everyday he has always made an effort to go to school or work, he has played sports but unfortunately he is consistently late, tired and or downright fatigued. He struggles to be awake on the same time line we are all running on, you know the basic time line of NIGHT! . . . Below is a chart of what his average sleep per night looks like on a regular basis. His is in grey
However this is where it gets complicated . . . if we did a chart on his average sleep TIME.. . He doesn’t have one, yep that is right he does not fall asleep at the same time any time, there is no true way of knowing when his body will release his sleep hormones to help him fall asleep. . . For him to have a normally life is non excitant. . . The saddest part of our research in learning about this neurological disorder, the fact he will NEVER have a normal life and will constantly fight to maintain relationships, jobs or a social life. . this is because when he is finally sleeping it is more than likely everyone else is awake and when everyone else is sleeping soundly, he will be wide awake until his body finally gives way and he sleeps any hour of the day or night . . . not to mention the fact he is limited in his short term memory and unable to add or subtract without the use of either pen and paper or a calculator . . . The anxiety and loneliness that is attached to this rare condition is epic and heart breaking to say the least but people’s shallow thinking that is more exhausting than anything . . . top things we are just down right sick of hearing
- He is just a teenager and they have strange sleep patterns sometimes lol Oh ok so why has he had it is WHOLE LIFE!!
- He will grow out of it hahahahahahah 18 years and still waiting
- He just needs better sleep hygiene (for all the normal sleepers out there – sleep hygiene is a large list of do’s and don’ts before bed and if and when you wake up in the middle of the night, usually the first thing a doctor will pass you if you have trouble sleeping one night)
- He just needs to learn to get himself up hahahahhaha lmfao oh really would love to see you wake yourself up after only an hour and half sleep in 3 days but cheers we will give it ago lol (Dickheads)
Finally 5. My most favourite or should I say most hated one of all – He chooses not to sleep!!!!!!!
He cannot choose when the chemicals are released into his body!! Yes we have tried EVERYTHING to kick start his body into a normal body clock time zone . . . 18 years we have tried everything suggested taken trial drugs, vitamins, alternative medicine . . . you name it we have done it. . . Trust us if he had a choice he would love to sleep when everyone else does, his condition is not self-inflicted nor is an option he just woke up and decided to have. . . . It is like saying to a paraplegic “well you choose not to walk, try counting sheep until your legs feel like walking again” seriously!!!
I am proud of how well he survives each and every day, some days better than others lol we all know lack of sleep can make us a little moody. I see how much he struggles inside to not disappoint those around him and yet due to his condition and the lack of understanding from others this is a regular occurrence which just eats away at him constantly. So all I ask is for our story to be shared to spread the word and to help others understand that this is not a choice but a condition we have to live with each and every day for the rest of his life. Help promote Non-24 awareness day November 24th 2016
More links for your understanding . . .
Stay safe and remember –
Inspire yourself, hold on to hope for better things to come, Love life!