Let’s Talk Fatigue

How I feel when I wake up in the morning and have to attempt to function

Until November 2019, I had no idea what it felt like to wake up and not feel more tired than when you went to bed. In fact, I didn’t know I was supposed to feel refreshed. After 21 years, I finally got some relief after starting a new supplement and finishing my IV Vancomycin. I felt this weight lift off my body, and my mornings became much more manageable. This was also a mental win for me because until that time, I was constantly doubting myself.

I didn’t wake up one morning and suddenly get sick. We believe I’ve had Lyme since I was 10 years old, and so I grew up for another 10 years thinking that the intermittent stabbing pains across my body, headaches, anxiety, and fatigue were just part of everyday life. After being diagnosed with Lyme in 2018, I was shocked when I looked at the symptom checklist. I kept turning to my mom and asking, “This isn’t normal?” This made it incredibly difficult to judge how medications and treatment protocols were working. I had no reference of feeling well to compare my current state. I didn’t know how much better I could get, I should get. To be honest, I’m still not quite sure. This led to me constantly doubting whether everyone was as tired as I was, and if I should stop doing treatment. When should I say this life is good enough?

The months of November and December of 2019 gave me the perspective I needed. I no longer woke up with a crushing fatigue that crashed down the moment my eyelids flickered with the morning sun. My first thought was not how I needed to arrange my day to take a nap. It wasn’t how early I could go to bed that night. I no longer needed naps. I could function on a semi-normal level. It was bliss. And now its gone. It was almost like a tease. While I’m grateful for those times, I now know exactly the kind of life I’m missing. I was blind to that kind of life before. It seems everyday with chronic illness brings another paradox in which my brain can get lost doing somersaults. And its exhausting.

So what do I mean when I say fatigue? How is it different from just being tired because you had a long day? When I’m tired, I still feel light. I still feel as if lifting my arm to grab my phone won’t require effort. Fatigue feels like each of my cells is carrying its own backpack of bricks. Mentally, my brain has no extra energy to come up with something to add during a conversation, and I just want to sit down. All the time. Being fatigued means constantly modifying your environment for a place to sit. Can I push through? Most of the time, but that just means my fatigue will be the only thing consuming my headspace. Usually, this leads to a weekend where I crash. That’s when you won’t find me outside my room much for 48 hours. But I can tell you that I don’t feel any better when Monday morning rolls around.

In addition to the fatigue that is central to my illnesses, the extra research, medication sorting, doctors appointments, and general mental energy required to fight adds to my exhaustion. That is a full time job in and of itself. Don’t let anyone tell you differently. If you can relate to some of these feelings, know that just getting out of bed in the morning and doing what you need to survive to the next day is enough. In fact, its more than enough. I still need to remind myself of that sometimes. One thing I try to think about is making a list of things that I’ve accomplished that day. On my worst days, it may not be a list that others would be proud of; but showering, eating three meals, changing my clothes, and trying to do some work is sometimes an accomplishment for me. Viewing those things as valuable because of the energy I know it takes to complete them helps me stay more positive. Give it a try sometime! Scroll to the bottom of the page to subscribe to the blog for more information on Lyme Disease!

Healing is Not Linear

One of the hardest parts of chronic illness is that you would never know it by looking at someone. This picture was taken at the sickest time of my life. In 2017, I arrived at back at WashU for my sophomore year fresh off of a tonsillectomy. I, of course, had complications from the surgery, so I was still healing as classes started up. I arrived on campus, and it was like a switch flipped. I wasn’t excited to see any of the friends I hadn’t seen all summer. My dorm was above the dinning hall, and suddenly I was terrified to go downstairs. This was the start of Lyme capitalizing on my weakened state and it never let up. I just didn’t know its name yet. Instead, I thought I had developed severe anxiety, nightly panic attacks and thoughts of self harm overnight. This year was the hardest of my life, and it only continued to get worse. After making a choice to transfer schools, I spent the summer in deep depression and a fatigue I couldn’t shake. Reading an Excel sheet gave me a headache and trying to work for a full day was impossible. I found myself falling asleep at my desk more times than I can count.

However, after continuous research that my family and I hoped could out-pace my declining health, we found an answer. Lyme disease. Most likely for a long time. After endless regiments of antibiotics, supplements I struggled to keep down, and IV antibiotics, my symptoms (some of which I didn’t even recognize weren’t normal) started to subside. This isn’t a post to explain how I got sick or to write out a chronology (I’ll write that later). Instead this is to show that despite what was a long and tedious treatment process, I made improvement. That should give us all hope. But it’s also a post to explain something that hit me hard this week. Healing is not linear. While I thought I had beaten the concentration lapses, extreme fatigue, and depression, turns out, I didn’t. At least not yet. Two steps forward, one step back. Apparently, that’s supposed to make me feel better.

I know many of those who are sick can probably relate to backslide. Once you’ve cleared a hurdle, it pops back up again. This is the first time I’ve experienced this significant of a setback. Last week, I woke up each day and felt a familiar weight in my body and my mind. A feeling I know very well, one I spent the better part of the last year and a half doing treatment to eradicate. But it was as if a switch flipped. My body was transported back to 2017, and I wasn’t ready for it. It scared me more than I can express. Scenes of what another three years back in the hell of a disease ridden body flashed in my mind.

How do we cope with the inevitable backslide? Not just when it happens, but the constant worry that it will. Its not irrational or letting fear control our lives because we know its a realistic reality. How do we plan for our futures with that looming over our heads? I don’t have any magic answers, so sorry if that’s what you were all hoping for. It’s what I’ve been hoping for too. With this new resurgence of Lyme symptoms, I need to confront this idea before I let it crush me. How do I live my life knowing it could change at any minute?

One foot in front of the other on bad days because that is truly all I can manage, but on the good (well…better) days, I look to find gratitude in what I can do, even if its my unique ability to watch the same basketball game four times in one day. When I have the mental strength and capacity to do so, I will choose to look for the good because it’s there. No matter how hard it might be to find. It can be the simplest pleasure; the beauty of a sunset perhaps. If I don’t do this, my bad days look a lot worse and my good days turn into bad ones. Now, I’m still working on this because there are many days that I give into the doubt and fatigue telling me that my energy is better spent elsewhere. That my effort will be in vain. If this week I try one more time than last week, then I won. Small goal setting is now my chronic illness mantra. Try it, it might actually make you feel accomplished.

It is hard to know that if this setback turns into a massive flare, I’ll still look like the same girl in this photo. No one will know. Unless I tell them and share my story, my pain, my heartache, and my struggles. I guess that’s what this is, and what I hope can make your bad days a little more relatable and a little less lonely. Scroll to the bottom of the page to subscribe to the blog for more information on Lyme Disease!

Accepting a Slow Weekend

“Sometimes moments of peace come as walks on the beach, but often times it’s slowing down long enough just to breathe.

– Morgan Harper Nichols

This weekend has been relaxing. I haven’t done a lot. Well, a lot in terms of the annoying perfectionist in my head, who today I’ve decided to name Eugene. Living with a chronic illness, especially one that I’ve had for a decade can leave me feeling as if this is my normal, and I need to be moving as fast as everyone else. Anything less is a form of weakness. To give a little background, I contracted Lyme Disease in 2009, but wasn’t diagnosed until 2018. Therefore, most of life that I can remember is with this condition. It is kind of my normal. However, I have been working on allowing myself grace, and to recognize that doing things without pushing myself is more than enough. In fact, its healthy. I’m just waiting for Eugene to get on board.

I think this a common source of guilt in the Chronic Illness Community. We fight with doctors and our bodies to live normal lives, but we sometimes forget to recognize that in the here and now, we aren’t normal. Instead, we are fatigued, have migraines, joint pain, and a multitude of other symptoms that we seem to push through without giving ourselves any credit. So this is me saying to you: I’m proud of whatever it is you did today and the rest can wait until tomorrow. Don’t forget to pass along the message to your Eugene too.

This weekend I had a paper to finish writing for my class, an assignment in which I needed to outline a topic and record myself for the rest of the class to watch on Monday (yikes!), and I wanted to buy some gifts for a Christmas charity drop off that closes on Monday. Just writing this I can see the fault in that statement, can you? Well, as all you Spoonies know, there are million steps in between each of these tasks that are essential to complete. I need to sleep enough, eat, remember to take my medications, brush my teeth, wash my face, do laundry that I haven’t done in weeks, and oh yeah, RELAX! But Eugene likes to tell me that I’m not allowed this relaxation until I’ve finished every major task and all the little ones in-between. When I am “lazy” and I watch TV or I hit snooze for an extra five minutes, (okay an hour) I am wracked with intense guilt. Why is this the case? Why can’t I accept that part of life, joy, and healing is taking the extra time in bed, watching another episode, or going to dinner with friends? Well, I’m going to blame that on Eugene. So this week, I’m going to work on tuning him out.

Don’t get me wrong, there are times when an assignment really needs to get done and laying in bed until 11:30 is not my brightest idea. But rather than berate myself when it takes longer than it could if I put the petal to the metal, I want to focus on allowing space for grace. This is true of anyone. People with chronic illness aren’t the only ones who have an annoying Eugene; instead, I think we could all give ourselves a bit more grace. However, this is especially true when our bodies don’t want to work as they are supposed to. Even tonight, I am going to allow myself to not proofread this post a thousand times because i’ve had a headache for the past five hours and staring at a computer is not helping.

Guilt is something that I struggle with in all aspects of my life and especially my illness. Living with Lyme is like being on a rollercoaster blindfolded. You have no idea when the drops are coming and when they will end. This is incredibly challenging in a world that expects you to stick to a schedule. I think this is the root of why we push ourselves so hard, and why we feel guilty when we have to take a step back. That is why I love communities like ours; people will hit you over the head until you give yourself space for grace because they know exactly what you are going through. In the spirit of Thanksgiving this week, I am very grateful for you all.

Speaking of the Holidays, I am concerned about this particular set. This is the second round with a diagnosed condition, and I am not sure how it will go. I know I will get a thousand questions about my health, which is very kind and thoughtful, but can also cause me a lot of stress. I don’t want to lie and say that I am am doing great, but I can’t say I am doing poorly because that is not always the case (remember the rollercoaster?) If I do say anything about the daily struggles, then I feel guilty for making my family members or close friends worry about me when I am sure they have their fair share of hardships. When I think like this, I need to remember that I didn’t choose to have this illness and I am not a burden for sharing or needing help now and again. I hope Eugene can remember this over the holidays too!

I hope everyone has an incredible Thanksgiving and eats whatever you are able and lots of your favorite illness friendly treat! Remember to give yourself grace this week! – Maddy

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Hi Everyone!

Thanks for coming along on this journey with me. Starting a blog is something I’ve wanted to do for a while. I’m dedicating my posts to my reality on a weekly basis (or however often I am able to post) of living with Lyme disease. To start off, I should let you all know I was diagnosed in October 2018, after searching for a true diagnosis for ten years. My Spoonie friends have been a light during all of the treatment this past year, and I am incredibly grateful. I hope this blog can be a source of comfort, a place to relate, and an opportunity to make all of us in the Chronic Illness Community feel a little less alone. No one person can shoulder the weight of their struggles on their own, so whether you have Lyme disease or struggle with anything in life, I invite you to come along for the ride. There will be laughs, tears, and some grammatical errors! So bring your Spoonie friends and let’s dive in!

This blog connects to my Instagram @Maddymeetslyme where I will give quick updates and let you all know when a new blog post is up! Scroll to the bottom of the page to subscribe to the blog for more information on Lyme Disease!

Good company in a journey makes the way seem shorter. — Izaak Walton

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