“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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