Recently, my therapist told me that I need to make sure that I have outlets for my processing of my various health issues. As a writer and a blogger, I have decided to channel my current (substantial) amount of angst into a weekly series. Or at least I am going to attempt to do so. We shall see!
I give you: Chronic Illness Wednesday because….I have a chronic illness, my favorite day of the week is Wednesday and this is my blog and I do what I want. 😀
Aside from raising awareness about the particular brand of chronic illness that I live with, I want to use this platform as a way to process things about my life that have changed since being diagnosed and a way to share ideas and coping mechanisms with the greater community of people living with autoimmune disorders and chronic illness.
So. Grab a cup of whatever makes you happy and join me for this adventure!
I have been living with the migraines, ADHD, anxiety and panic disorder for most of my late teenage/adult life. The hives have been a new development as of this summer. I work full time with an additional part time side hustle, I am a parent of one, I live with my partner and my child, and our little family is joined by a cat and a gerbil who have learned to mostly coexist.
Life is good when I look at everything I have in my life.
Life is hard when I look at the health issues that prevent me from enjoying my life fully.
Which brings me to…..
This Week’s Chronic Illness Topic: Constant Fatigue & Exhaustion.
They say the average adult needs a minimum of 7 hours of sleep a night to function well. If that is the case, I have pretty much never functioned well during my time as an adult. But in all seriousness, the level of tired that I live with right now far exceeds the tired that comes from a one-off of missing a couple hours of sleep. It feels like my very soul is tired. It’s the first time in my life that I have truly and completely understood the term: bone-weary. And it sucks.
Aside from the hives that cover my body and the migraines that split my skull, this constant, unshakeable, bone-weary level of fatigue that lurks in the background of my life is probably the single most frustrating symptom that I live with. It’s unpredictable and it is getting markedly worse as I try to navigate the medicine cocktail that I am taking to manage my other symptoms.
There are days where it feels like I am trying desperately to exist through brain fog and yet all I can manage is somehow a limp swim through my life relying solely on rote memory. Other days, it feels like I am about to come down with a horrible case of flu and my body is achy and I can feel the tired pour onto me. Then there are the days where my muscles hurt like I just did an epic leg day at the gym, but really? All I have been doing is sitting on the couch and try to micromanage my life using technology. I never feel rested anymore. I sleep but I don’t feel refreshed. And that? That, my friends, does something to you over the long term. It’s bad for your body, it takes a toll on your mental health, it affects every aspect of your life and it impacts the people you share your life with..
On a bad day, when I shop at the grocery–I find myself leaning on the cart like I am dependent on it to keep me up. I kind of am. I get so tired walking around the store and my kid is reduced to the person who fetches things so I don’t have to walk another aisle looking for wherever the moved the PopTarts. Just the other day, my partner gave up part of his day off from work to drive me to an appointment that I would normally be extremely capable of getting myself to because I was so tired I felt light headed.
Fatigue really freaking messes with you.
Don’t get me wrong, I have good days too. I have days where I can almost get a glimpse of the self I used to be. Days where my work day driving a desk for 8.5hrs doesn’t completely wear me out. Where I can run in the park with my kid after work and I can come home and still have energy to make dinner and interact with my family. But lately, those days feel few and far between.
The pharmacist instructed me to avoid the gym to save my immune system from opportunistic infections, but truthfully? I don’t have the energy to run on a treadmill in the first place.
Friends invite me out and 9 times out of 10, I cancel. Not because I don’t want to see them or because I am a flake, it’s because I am legitimately THAT TIRED. It’s not that I am just a little sleepy, it’s that every pore in my body and what’s left of my soul feels tired. It aches from exhaustion. I force myself to get through as many things as I can each week, for the sake of my job and my child and my partner, but I have never, ever been this exhausted in my life. And I resent the hell out if it. I resent the isolation and yet there’s not a whole lot I can do about it.
I resent the fact that I am in my early-thirties and sometimes, I barely have the energy to bring groceries up to my apartment.
I resent the fact that my illnesses require rest to help prevent a flare up yet the medications needed to manage my symptoms cause horrific insomnia.
I resent the fact that I can do nothing for an entire day and at the end of it, I still feel bone-weary.
The itch and burn of my hives are horrible sometimes, but I can mind-over-matter distract myself.
The pain of my migraines are extreme but I can usually function through the minor ones.
Yet the fatigue? The fatigue is utterly debilitating.
Medication doesn’t touch fatigue.
Resting on the couch doesn’t make it go away.
Eating more kale or less gluten or some sort of dairy-alternative doesn’t make it better.
Fatigue makes my self-care borderline impossible. It makes me cancel on people repeatedly. It interferes with my ability to stay on top of my day-to-day life. It interferes with my ability to parent, to spend time with my partner, to be a good friend and good advocate. It makes my work 10x harder than it needs to be.
Fatigue is my nemesis and my ever-present companion.
So, friends that I have cancelled on recently: I am sorry. Please don’t ever think it’s you, it’s really not, it’s the fact that I am exhausted to a level that I don’t even fully understand. I’m doing the best I can, but to use the spoon analogy? I am so out of spoons right now, I don’t even know where the spoon drawer is.
YOUR TURN: How does fatigue affect your life? Do you have any strategies that have been successful for you? Tell me in the comments!