Learning to Ride the Waves

I had actually planned to get a lot done today; I wanted to start prepping my vegetable garden beds for the fall while we had some nice weather today, move the remainder of my potted plants into the house (since the temperature is starting to really drop in the evenings), get some cleaning done around the house, and make some progress on my crochet Christmas presents for people. Like I said, this is what I had planned for the day, but this is not what the day had planned for me! As soon as I woke up I knew things were not going to go as I expected. You see, I have had a terrible week…my joints have been more achy than normal (which I had chalked up to the weather changes/rain storms we’ve had going on), I had a massive migraine after my Benlysta infusion on Tuesday, I had a few days of my pericarditis along with some palpitations rearing its ugly head, and I’ve just been feeling more run down than normal. Then this morning I woke up feeling exhausted, my joints screaming (no swelling though, thankfully), and a low-grade fever; all signs of the beginning of a lupus flare. So rather than getting to everything on my to-do list, I moved the plants inside and then I took a shower, brushed my teeth, put on a pair of sweats and favorite “flare day” t-shirt (check out the grainy picture below for a laugh) and climbed back into bed. I’ve got my computer, my favorite rose water spray, lots of fluids, and Netflix…everything I need to take it easy and rest today.

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This is one of the things about lupus that has been very tough for me to come to grips with; you can have as many plans, schedules, and timetables as you want, but when lupus tells you you’re not doing anything today – you’re not doing anything today. And that’s exactly what you need! I look at lupus as a relapsing – remitting illness, in the sense that you will have days/weeks when you’re able to get things done (you may have some aches/pains/fatigue, but you’ll be able to manage your symptoms), then – out of nowhere – you will relapse (have a flare-up) and your symptoms will knock you on your ass. No matter how much you fight it and push back against it, those bad days are going to come, there’s nothing you can do about it and fighting it only makes it worse. Because of this, you have to learn how to ride the wave. Take advantage of the good days (within reason obviously), but be able to let go of plans and expectations, and judgment when those bad days arrive.

 

Lupus is a disease where your body is, in the simplest terms, attacking itself. When you get the flu, part of the reason for the fatigue you feel (and the reason you are told to rest) is because your antibodies are fighting against the foreign invaders, trying to rid your body of the bad stuff. When you have lupus, those same antibodies are attacking you (technically the connective tissue, but you get my point), leaving you feeling flu-like symptoms on top of whatever way lupus affects you (for me it’s usually pleurisy/pericarditis and in inflamed joints). So, as you can imagine, with all that going on in your body – you NEED to rest and recuperate when your body calls for it.

 

Being able to take each day as it comes and accept your body’s fluctuating limitations is such an important lesson for anyone struggling with lupus or any type of chronic illness. There will be days where you have to cancel plans. There will days where dirty dishes will have to sit, piled up, in the sink. There are times when you’re going to have to use that grocery delivery service, rather than running out to the store. There are times when the most you will be able to do is brush your teeth and move from the bed to the couch. You have to be willing to let go of what you THOUGHT you were going to accomplish that day and remind yourself that these things are not selfish/lazy/whatever judgment your brain comes up with; this is what is going to get you to those “remission” days quicker. So if – like me – you are in a full blown flare or your chronic illness has you feeling run down: grab a blanket, put your feet up and bust out the Netflix…this is exactly what you are supposed to be doing today! 

16 thoughts on “Learning to Ride the Waves”

  1. First of all, love your shirt! Second, thank you for your truth! Give yourself a break! Auto-immune diseases are rough! Take the time to Netflix & chill as often as you need too!

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  2. My mother suffered an early-onset stroke in her early 40s caused by a malformation in her brain. While she was still recovering, I would see her try to do the things she normally would. She’s the type to move the furniture around to get a new feel of our home and it took her a long time to accept it. What you’ve written has given me insight to what it could’ve been like for her, I was a kid then and unknowing. I hope the flare up eases soon.

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    1. That is the type of person I was as well. Before selling my house I would hand clean my floors and move things around for a “fresh look” frequently. It can be difficult to feel like you are losing your ability to do the things you once did because it feels like a loss of control. My thoughts and love go out to your mom, having to go through that so young. Thank you for your kind words!

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      1. It makes me wish I could have done things differently, but now I know to try harder at understanding others and putting myself in their shoes.

        P.S. I hope you don’t mind me reading along your journey.

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  3. Thank you for spreading awareness about lupus. I have someone with lupus in my family and struggle with chronic lyme and PCOS myself. Some days are tough but I always try to see my diseases as a chance to get healthier and better every day.

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  4. Really interesting read. I have a cousin with lupus but I never knew too much about it other than how it affects her. I hope your flare up is not prolonged and you get back to doing those things you had planned.

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  5. Thank you for this blog post. It is so important for everyone to remember that your body knows best. It doesn’t always feel like it in the moment because you have a long list of to-dos, but often we must listen to what our bodies are telling us.

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  6. I seriously commend you for living and thriving with chronic illness. We learn so many ways in school to help curb the symptoms for our patients, but I know how hard it can still be! Way to listen to your body and give it what it needs!

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  7. I don’t have a physical illness, but I have really bad anxiety that can really just hit you when you don’t really expect it. Riding the wave is just something you have to do. Good luck on your journey hun. Sending you lots of love.

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