Into the COVID Holidays We Go

For as long as I can remember my mom, my aunt, my grandma and I have gone to craft shows together during November and December and done a huge amount of Christmas shopping. I love this tradition because of the time spent with my mom and the other women of the family but also because we support so many small business owners, we find fantastic, handmade gifts that our loved ones won’t be expecting and we support individuals who put such time and creativity and passion into every piece they are selling. 

We’ve entered what is obviously going to be a very unique, unprecedented holiday season. I think there is some nervous energy and anticipation because of all of the unknowns, but the holiday spirit will nonetheless take over as holiday music and movies flood our car radios and TV guides and suddenly pillsbury cookies with turkeys and christmas trees are next to the pumpkin pies in the featured aisles in the grocery store.

Since we’ve entered flu season the risk for COVID19 has obviously increased as well and we are all faced with questions like how do we celebrate the holidays this year? Is it safe for our extended family to gather? Or even to travel and get here in the first place? Are the school aged kids safe to be around the grandparents? How do you social distance or keep masks on when you’re gathering for Thanksgiving supper or Christmas morning gifts? 

What about black friday? Christmas shopping? Christmas church services? Baking day? All of your traditions that involve people, food, hugs and kisses…

Sadly, COVID19 will be playing part in our holiday happenings this year, but that doesn’t mean we won’t have opportunities to make it a beautiful, meaningful holiday season. It will be one of a kind, new territory for all – we know at least that much! 

Here’s the thing… for some of us, these aren’t new holiday complications. The COVID life isn’t so different from that of a chronic illness warrior who is sick to the extent of being homebound or even bedbound. We have always had to wear masks during flu season and avoid anyone who has been sick, even if that means skipping family gatherings or school/work. It can become an isolating time, you don’t get many visitors, it’s often just you and your caretakers, your family members, and your outings get as exciting as taking a drive on the back roads with your camera, capturing the sunset or if you’re really lucky, the bald eagle. 

So you can see how this time in quarantine has just amplified that spoonie lifestyle, and heightened the isolation, as even going to the doctors office is risky,   going to 7-11 to get a drink on the way home, running to the dollar store to get items for packages, heck, even mailing the packages is on the no list for me now. (Wear your masks, please. )

Thanksgiving can be a tough holiday to feel really involved in, really comfortable going to as a gastroparesis warrior/tubie. It is all food, the air filled with the smells of meat and pie, and there are so many loud kitchen sounds and multiple conversations going at once, lots of beautiful laughter, and oh so many forks tapping on the fine china around the table. When you are sitting at the table but are not partaking in the meal it’s hard not to become hypersensitive to all of the little noises and to be overwhelmed keep up with the conversation when you really just want to burst. Or eat. Or go in another room and just be. 

It can be difficult to adjust to being in a setting like that. For me it’s not about people eating in front of me, it’s more that it’s a holiday tradition that is suddenly stolen from you, it’s a bit different than a normal family meal or hanging out with your friends while they have a snack or whatever. This is something the whole family is doing, it’s more than a meal, it’s a celebration and a tradition, memories made, memories being talked about, but when you feel so sick and you can’t sit there any longer without getting sick, you learn to seperate yourself. 

Thanksgiving is a time to spread awareness, to encourage others to be thankful for something that everyone does all the time, so many times a day in so many settings without a thought, that has been taken from so many of us – the ability to enjoy food. The ability to be independent, to work and go to school, to live on our own…on thanksgiving, though, mostly focus on the eating :). I always encourage my readers to mention this to their family and friends on thanksgiving or any other time it pops into their minds, even just having froyo with friends or at lunch at school, whenever and wherever, take advantage of it and remind people that even the most natural parts of life can be taken out of nowhere. 

COVID19 is (hopefully) something we won’t have to alter our lives for forever. They are working hard to find a vaccine, to find an answer to get us back to real life and out of global crisis. Thank god. But for those of us with chronic conditions, we will continue having to alter holiday traditions, continue feeling out of place at times, continue wearing masks during flu season; our lives were complicated in these ways before COVID and they will be this way post COVID, but this year you have gotten a taste of our situation, and that’s something. 

Honor our struggle by not taking these limitations for granted when your COVID experience comes to a close.

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

The Myth of Malnutrition

Lets talk malnutrition. 

Malnutrition is one of the most misunderstood medical concepts; it’s complicated and can present itself in so many different situations and with differentiating signs and symptoms in different people. When you hear malnutrition you probably think of pre-me infants with failure to thrive, kids in africa, or people caught in blizzards on Mt. K, right? The extremes? 

What you don’t usually think of is 16 -30year old females who have previously led healthy, active lives but all of a sudden stop processing food. And then there are the little kids, 3-8 year olds who just cannot absorb nutrition and gain weight and strength like they need to be doing at that age for developement. Can you imagine? Most of these people end up on tube feeds or IV nutrition in order to get nutrition and hydration, in order to stay alive. 

Another myth about malnutrition is that you must be skinny if you’re malnourised. I mean if you can’t eat you lose weight right? No brainer. But no, that’s not how it always works. The body can do one of two things when you are malnourished, it either begins eating away at any extra fat cells you have and then eventually turns to muscle as well, leaving you skinny, weak, and easily dizzy, clumsy, tired, and in pain, OR your metabolism shuts down and you begin packing on ANYTHING possible, any sugars, carbs, liquids, etc. are stored as fat and you begin gaining weight even if you hardly take in 200-1000calories a day.

Being a “gainer” as they say can be extremely difficult both physically and emotionally. You aren’t eating, you aren’t getting to enjoy your favorite foods, yet you’re packing on weight with no explanation. It’s unfair, it’s uncomfortable, and it’s often extremely difficult to turn around, nearly impossible to reverse no matter how hard you try, no matter how much you exercise or how little sugars or carbs you take in. 

People who are not educated on this topic don’t always take people seriously about their nutritional level if they are not underweight. They must be lying if they are gaining right? Wrong. Our bodies are just different, and we may not know exactly why, but it happens, and that’s a fact, not a myth.