So I am gonna go out on a limb here – I feel like it is probably safe to say that we have all heard or said the phrase, “I’m too tired to sleep,” right?
If you have not heard it or you don’t know what the heck it means, just keep reading and I think you’ll understand by the end of my post! If you don’t, feel free to ask 🙂
One of the worst, but most commonly understood struggles that comes with Chronic Fatigue Syndrome and Dysautonomia/POTS is when you wake up from a “solid” nights sleep and you still feel exhausted. You have a full day ahead of you with no energy? I mean, does anyone else feel like you have energy when you don’t need it but are lacking when you need it most?
Chronic fatigue is a really difficult condition to live with. It almost always shows itself as daytime fatigue – chronic fatigue, duh right? Okay, but that absolutely does not mean you are guaranteed a solids night sleep just because you are exhausted, right? Duh! You can have chronic fatigue and sleep all day and night and still be physically and mentally exhausted. You can sleep all day and be awake all night, and not by choice, not because you’re out partying or staying up watching movies and eating ice cream, but laying bed in the dark, exhausted and trying to sleep…
Fifth grade. I was in fifth grade when my insomnia came to life, so I’m a pro by now. I also have hypersomnia, something most haven’t heard of but essentially, I’m exhausted all the time and require regular rest, often times a nap or two throughout the day, & on my bad days, I am sleeping more than I’m awake. What really complicates things for me is the hypersensitivities, adrenaline rushes and narcoleptic spells.
Majority of the time I am extremely fatigued, mind and body, but there are times when I am feeling such exhaustion paired with severe pain and whether it be due to pain, fatigue, or medication, I slip into an adrenaline rush that takes me from 0-100 in the snap of your fingers. These adrenaline rushes most often hit when I’m in a state of physical and mental fatigue & exhaustion and are in no way healthy, pure energy – it does not come after a good nights sleep or a killer cat nap, it doesn’t occur when I have plans made and am looking forward to that, it is a surge of adrenaline that hits at any time, lasts who knows how long and sometimes, for what feels like a minutes time, masks my exertion, distracts from the pain, and allows me to have a little, tiny taste of the energetic, alert, and active person I was before I got so sick.
You know those anxiety driven dreams we have about showing up naked to school or tripping and falling in front of a new crush? Well, in the life of a spoonie, those dreams come true! I have had more than my share of awkward hangout happenstance, with both old friends and new friends, most of the latter never having asked to hang out again. I’ve fallen asleep at a bar, in someone’s car, had to take IV meds plenty of times, plus just telling people about it all is always kinda awkward since people don’t know how to react, but basically every “get to know you” question leaves me with a blank if I am trying to avoid talking about my health situation, so it’s better to be up front about it than to try and make things up. I have yet to try to go on an actual date with a guy I might like since getting so sick, but if it’s anything like making new friends, I think I will hold off for awhile on that.
I am often able to be up and about and even get more done during one of these rushes; I definitely communicate more, sometimes talking fast and nonstop, rambling on about who knows what and driving my family crazy, which can be a hint I am having one. Though annoying, I think my parents sometimes enjoy my less than legit bursts of energy b/c I am more like my pre-illness self when I’m hyped up, so yes, we know they aren’t “normal” energy but what about me is normal?
The challenging thing about this is that these rushes can last 30 minutes or 3 hours, but once it’s over, it’s over and I crash HARD and FAST. When I go down, I go down, and depending on what I used that “functional time” for, I often require a day or two of recovery time. Usually, though, it is so worth it.
That said, I’m thankful to be having less and less narcotic episodes – I am almost 6 months “clean,” aka no longer falling asleep standing up or mid sentence. I have found a couple medications and lifestyle routines that help allow me some sense of freedom or independence since I’m not being babysat 24/7 – I have plenty of photos of myself sleeping in different locations thanks to my family members who like to send them to one another. I have my little tricks for revitalizing and also know what symptoms to look out for and when it’s time to cut a social visit off before having it spiral into “no second hangout” zone. I’m ready to go.
Being sick for so long and going through so many surgeries, procedures, tubes and lines and changes in my body I just don’t have a great self confidence, I’m uncomfortable in my body physically and mentally, it doesn’t feel like MY body. I was a fit athlete, a healthy eater, I spent hours at the gym every day before I got sick, and now I have so little control over my body and it’s not easy. I have to remind myself that I am worthy and able, that I enjoy every outing I say yes to, that meeting new people has been fun, even if, for whatever reason, we only hang out once.
The world can be an intimidating place when you are isolated from it for so long. It’s not easy to navigate as a medically unique introvert who leads a very unusual life, but if you just look past that and into who I am, I’m really not any different. I may have a unique perspective on things and a pretty open schedule, but that’s about it 😉 Oh, and I won’t eat your left overs, heck, I’ll cook for you and still not eat your left overs 🙂 Who can beat that?
I want so badly to be part of the real world, but my body is fighting so hard every step of the way, almost as if it has a mind of its own and wants me all to itself. It’s an every day battle, all I want is for my mind and body to be one, to feel like one, to function like one, to be a full person, a whole woman again.
So even those short periods of relief from pain and the unpredictable, short-lived bursts of adrenaline have the ability to give me a taste of the world, a taste of life, a taste of ME. Not sick me, not poor Rachel, not anything aside from just being ME. It reminds me that there is a life out there that I am fighting for, that my life outside of illness is worth fighting for…
I WILL find my way back to being just Rachel.