Narcoleptic learnings

These past few weeks have been horrible to say the least. I should be buying shares in Kleenex with all the tissues I’ve gone through with my constant crying! The final weeks to the end of the year are never easy for anybody. We all get tired and stressed, hanging out for our much needed break. This year I seem to be copping it twice as bad as normal. It’s been a long, hard year and I just want it finished with. It’s all making me more exhausted than normal, but considering my standard state is exhausted, you can imagine how I feel now!

In feeling as down as I have been I decided to do some more research into narcolepsy. Oddly enough, it’s actually made me feel better. When faced with a difficult illness whether it be physical or mental, we can often think and feel that we’re alone. Whist I have the most understanding family and partner, I have been feeling lost and alone – not even fully understanding the illness myself. So today I went on the search of information from medical organisations and fellow sufferers. As a newly diagnosed narcoleptic, I discovered that I knew surprisingly little about the illness I’ve carried with me for over 1/3 of my life. 

For starters, I wasn’t aware that as a narcoleptic I am actually missing cells in my brain *cue the dumb jokes*. In “normal” people, there are 70,000 cells in the hypothalamus area of the brain containing the chemical hypocretin (aka orexin). For those of us with narcolepsy, it is between 3,000 and 10,000. Autopsies of people who had narcolepsy have shown scar tissue in the areas of the hypothalamus where hypocretin brain cells used to be. So essentially this means we’re all born with these cells, but for some reason they’ve later died. 

Another thing I learnt in my Googling was an interesting statement which would help me to explain to people just how tired I feel. It’s been said that the average person would have to stay awake for 48-72 hours before they would feel the strong call to sleep that I feel daily. There’s been times where I’ve had to go to the toilets at work so I can close my eyes and attempt to recharge because I just cannot physically keep my eyes open any longer. 

When I don’t have the luxury to sleep in order to recharge, I instead turn to food. When your body is running low on fuel, it will naturally crave energy rich foods. This in turn leads me to tears as I suddenly fail to be able to do up my size 10 pants at 6am this morning. I’m now faced with attempting to cut back on what I eat as well as find the energy to take the dog for a walk. Not easy. 

Thankfully, however, my sleep specialist has increased the dosage of my medication. So as of tomorrow I’ll hopefully start to gain a bit more energy to keep me awake during the day. This isn’t to say I’ll be able to party until 4am, but I will be less inclined to need to nap multiple times a day. 

Hopefully this new research will help me feel less useless, guilty and lazy. It won’t be easy to change my own thoughts and feelings, but I can but try…

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