I always tell my boyfriend, “I never want you to truly understand what it feels like to have Lyme or any of the other illnesses I have developed from it…
I feel if you truly understand, you would have had to go through it and I never want you or any other person to go through what I am going through.”
I sent him “The Spoon Theory” one day in hopes he would have a better understanding of how I live my “Lyme life.” My boyfriend being himself, however, never questioned how I felt or what an ordinary day in my life was like. He always supported me and was understanding.
I fought him for understanding…naturally…
“How can you understand!? The fact that I can never figure out when & how much of my medicine to take to stay awake, because the effects change day to day, isn’t normal!”
This conversation comes up usually when I debate whether or not I can go out to dinner and/or a movie; to go to one or the other is quite the accomplishment for me; both is extremely rare. Why? Narcolepsy, Chronic Fatigue Syndrome (CFS) and Excessive Daytime Sleepiness (EDS).
Since I have multiple sleep disorders, my life is scheduled around the stimulants I have to take to stay awake and the medicine I take to go to sleep– when I say “my life”, that doesn’t mean really living life; it means the simple things- like getting out of bed, getting dressed or running a simple errand like going to the post office.
So, if I want to go to a movie, I need to take enough medicine to stay awake, but can’t take too much where I’m up the whole night; If I go to dinner, I have to reverse the stimulants (since a common side effect is loss of appetite) but can’t reverse it too much or I’ll use all the energy I have left keeping my head up at the table.
It’s a vicious cycle.
I realized, “The Spoon Theory” wasn’t something my boyfriend needed to read, but something I needed to. I am unable to accept the fact that I have Lyme, which resulted in narcolepsy, CFS, EDS and more- (mostly because there is a treatment for Lyme I can go through that will completely get rid of the bacteria in my body- the only problem is fundraising the money I need for it; and currently there is no cure for these sleep disorders- only managing it the best you can. This all could have been avoided.)
I am always stressed because I have no control over how tired I am on a day to day basis, or know when one of my “sleep attacks” will come on- but I never stop trying to get control over it. Most of all, I hate the negative stigma that surrounds narcolepsy (or fatigue in general) and the common misconceptions.
I’m tired. All the time. That doesn’t mean I’m lazy and please don’t tell me that some fresh air will help. It’s not a choice. And yes, I know I don’t look sick (“Spoonies” have a special talent where they can feel tired and all these aches & pains throughout their body- but never give those around us, the slightest hint that it’s going on)
I didn’t need to explain anything to him. I had to remind myself I’m not alone and I’m not the only person that feels this way and has the same battle to fight, just like I do every day. I don’t have to go into such detail when I try to explain to others what it’s like to live with Lyme and feeling tired all the time with “The Spoon Theory.” It is especially great since it explains things in a way that’s easy to understand. Most of all, I don’t have to say, “I have narcolepsy.”
I never know how many spoons I’ll have when I wake up, how many I’ll have tomorrow, or the day after tomorrow. But with this story, I save multiple spoons. It saves me the energy I would have needed to explain my story from start to finish. If they laugh, make fun or don’t TRY to understand, they were never worth it.