Chronic Fatigue Battles Adrenaline

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.

Until then,

xoxo

To Those Who Hold My Quality of Life in Their Hands

To Whom it May Concern,

My name is Rachel, I’m 22 years old and live in Virginia. I have an incredible family and two dogs who are the light of my life, and I’m currently living at home on a “break” from college. I’m a recently self discovered artist, I love painting and photography, and I also have a blog. I love working out and swimming both competitively and for fun, my favorite places being Smith Mountain Lake or swimming holes in the rivers, I was born to swim 🙂 I also love driving the back roads with my music and the wind in my hair, I’ve always wanted a convertible. I plan to have a beautiful wedding dress; in fact, if there’s no husband by 35years old, I plan to go try on dresses and wear one because I CAN. I want to travel. I want to live.

I’m Rachel, I’m 22 years old, and I’m a chronic pain patient.

I’ve been sick for six + years, and I have a myriad of chronic illnesses that leave me feeding tube and central line dependent for all “food” and fluids, and with severe nausea and crippling pain every day. There are many days when I struggle just to leave my bed and walk around the small upstairs floor of my home. I sometimes go weeks without leaving the house aside from appointments or my mom driving me to see a sunset or flood or snowy site. I’m often unable to paint or work on my blog due to the pain in my hands and arms becoming overwhelming… I often can’t look at my phone or computer due to my sensory overload and my migraines.

As much as we chronic illness patients love to say that “our illnesses don’t define” us, in reality, symptoms like severe, crippling pain can leave you unable to move, unable to walk, unable to accomplish the simplest of tasks, including self-care/hygiene without the help of a loved one or a caretaker. It causes “painsomnia” aka insomnia caused by severe pain, which in and of itself can be debilitating. The pure exhaustion from being in such high levels of pain can also take over your whole self, body and mind, it can be a scary time if you aren’t able to get relief even just for a couple of hours a day.

I often tell people that I feel like this is a life sentence for the innocent. I feel like sleeping beauty, stuck in her tower waiting for her prince, but I’m stuck in my room and there’s no end in site. I’m the sick girl in the middle of nowhere, but I’m lucky to have parents who work so hard for me.

this is a life sentence for the innocent

Do you have children? Grandchildren? Siblings? Can you imagine watching one of them have a quick yet long term deterioration of their health, and left with daily struggles and little to no relief? Because you’re not doctors or pharmacists so I have trouble understanding why you get to determine who gets these meds and how much we can have….If you aren’t a doctor and you aren’t a patient or someone who has experienced this first hand, what gives you the right?

Last month my pain management doctor and I decided to change my pain management plan after 6 months of consistency, in part to my body’s ability to build up tolerances to medications with lightning speed and in part to the new restrictions on pain medications. With my high, high tolerances and severe, daily chronic pain, it can be extremely difficult to treat, and sadly, it’s about to get harder. Due to the acts of those who abuse drugs, most of whom are not even chronic pain patients, this battle to manage chronic pain and improve quality of life is becoming nearly impossible for those of us on this side of the crisis – those of us who use our medications as prescribed and take them only to help us function on the bad days.

It shouldn’t be so hard to get medications that can improve your quality of life, I struggle so much with that thought, why would they take away these medications when they can help us make life livable?

I hope that the government and the insurance agencies will one day realize how ridiculous this all is, and that they’re stealing whatever potential that I or any other chronic illness patients like me have for relief and a more “normal” lifestyle, taking away the ability to pursue my dreams and my goals without the fear of my pain becoming too much. In this process they’re also taking a doctor’s ability to do their job to the fullest extent right out from under them as they are no longer able to treat patients to the fullest extent or in the way that is best fit for that patient.

There are so many things I want to do in my life. Like any 22 year old, I have goals and dreams and desires, but I also live a life most people my age don’t even know exists, a lifestyle that most can’t even phantom. Sometimes I can’t even imagine what I would do with myself if I were to make it back to society, but I know I’d quickly pick it back up and value every day, every moment, more than any healthy person could.

More on the restriction/ a great article https://www.statnews.com/2018/03/06/cms-rule-limits-opioid-prescriptions/

Willfully Determined

Yesterday I pushed myself to do more and to do different. I decided to be a 22 year old for a few hours, I just ignored the fatigue, took the pain meds, and went to back to back movies (7-11:30pm) with my sister, who didn’t think I could stay out late anymore. It was a gift to both of us to be able to spend that time together, just enjoying doing something that was so out of the norm.

Usually I sleep through 60-80% of movies anywhere we watch them, our basement, my room, the movie theater, other peoples houses… But last night I worked hard to stay awake, and I did a stellar job. My POTS/dysautonomia leaves my body unable to pump blood to my brain when I sit down for too long, so I fall asleep or pass out even if I’m loving a movie or having a great conversation with someone; but usually, if I move around or take a walk I start to feel much more human again and stay awake for at least 10-20 minutes 😉

My family asked me if I really had energy for this, and here is what I told them,

“No, I don’t have the energy, but this isn’t about energy.  This is about desire and determination.”

Sometimes I have to accept my symptoms, accept my situation, and make a choice to push past all of the exhaustion, pain, nausea, and sensitivities so that I can remind myself and those around me that I’m still me, and that there are still things out there, outside of my “safe zone” (aka my house and my room). Watching the world go on without you can be a very strange feeling, it’s like watching from an outside view, looking down on the life I thought would be mine and watching others continue on without me. The world doesn’t wait for anyone.

Recently I’ve been hearing a lot of “nothings” from doctors; some literally don’t have anything to say, don’t answer emails or calls or anything, others telling me they can’t take on my case or I’ve exhausted the options they can offer. It’s a lot of “keep you comfortable” and “manage symptoms.”

After so much of the same, I’m so tired of doctors and meds and tests or treatments that no one actually thinks will work. I want to live. I want to experience my youth, I want to really feel alive and I want to cross items off of my bucket list.

I want to travel and see incredible sites and take countless photos. I hope to visit all of the girls who I’ve met online, the ones who have helped me through these years of illness, and I want to meet new people, and fall in love. I want to get rid of these tubes so I can swim with dolphins and scuba dive, get as close to my mermaid dream as possible.

I have a lot of goals, and I may never accomplish all of them, but they make for some happy thinking & I never pass that up. 🙂

 

Recovery: The Real Challenge with Surgery

The past two weeks have been even more challenging than my “normal” for both my body and my mind. I had surgery two weeks ago to place a new/additional feeding tube and we ran into some challenges and now I am trying to heal and recover.

I’ve had to spend more time in bed since getting home from my surgery because I’ve been unable to move much on my own. For the first week I couldn’t sit up, stand, walk, sit down, go to the bathroom, brush my hair, or do anything for myself. Being 100% dependent on other people is really hard, regardless of the fact that I was already disabled and very dependent on my parents for so much even prior to surgery.

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Kevin needs his new tube placed!

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Baxter alerting me.

I have to admit that the first week or so post- surgery is all a blur. There was lots of pain, many doctors, a painful car ride home (or two), a lot of sleeping, medications, ambulance, pain, another ambulance, an awful ER, pain…. But what I do remember is that both of my parents were right there by my side the whole time. There was never any talk of hiring a nurse to do the hard work or asking another family member or close friend to come help so my parents could go back to work. Every day I had at least one if not both of my parents there taking care of me, no complaints or mention of using up their sick days.

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3 tubes?!

For the first many days I slept 20+ hours a day with the help of pain medication, nausea medication, and sedatives, which all together helped make me more comfortable. After my ER trip on Monday/Tuesday I stopped taking the heavy pain medications because they delay gastric emptying so I also stopped sleeping and instead started having major insomnia again. By Wednesday/Thursday I was starting to walk on my own and eventually getting out of bed by myself, too. Although I run out of energy quickly and my pain levels are still severe, every step forward is worth a celebration.

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Our one and only trick or treater 🙂 My favorite visitor!

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Always blessed and spoiled by my parents’ coworkers!

Having such a supportive and involved family made all the difference for me; I didn’t have to worry about keeping up with meds or finding a good nurse or anything because my parents and sister were on 24/7 “Rachel Duty” for as long as I needed them. We also have an incredible community that supports me by sending cards, flowers, and gifts but they also support my parents at work and through facebook and texts/calls of support and well wishes. Being the parents and care takers of a young adult as sick as I am is no easy task and it’s extremely important to have that support.

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Mom sleeping in the ER.

Surgery is tough, but recovery is hell. Waking up each morning in major pain and knowing it’s not going away isn’t easy on anyone physically or mentally, but each small improvement or sign of progress gives me hope. Life is precious and every day that your body is functional and pain free is a gift; I encourage you to take advantage of every day and live life to the fullest, always follow your heart and do more of what makes you happy. Find joy in every day.

Xoxo