Nope, That’s Not Quite Right

I will admit that I had a great day today. I got to be with a friend while we socially distanced in nature. It is always amazing to be outside. It’s wonderful to be outside with someone who rarely gets an opportunity to go and exclaims over everything. It made it more meaningful for me as I stop noticing things as going outside is built into my self care routine.

I got home with just enough time to fill my water bottle, text a couple people, post my beautiful pictures on social media and collapse into deep sleep for 3+ hours. I’m having a hard time writing this as it’s hard to stay awake. I love showing how I conquer chronic illnesses and chronic pain by how I move.

I appreciate that this is my blog and can say my truth. Social media is a tricky thing. If I post pictures of my reality most of the time, which is terrible fatigue from autoimmune and inflammatory diseases and the fact that my walk in the woods meant I spent the rest of my day managing bad spasticity in my legs where they contract, straighten, and my toes curl painfully into awkward positions after movement, I can get called “attention seeking”. If I post my victories, I have been accused multiple times of not being sick and lying and attention seeking for that too. It’s a tricky game to play as no one sees or knows my reality but me.

When I woke up this morning, it was if I could feel the rods screwed into my spine. It was some of the worst back pain I’ve experienced in a very long time. A lot of people who have had back surgery that hurts months to years post surgery (I’m 17 months out) stop moving as it hurts. I know if I succumb to the pain, it will only hurt more and movement will become harder. So I didn’t lay here this morning (well I felt sorry for myself for a few minutes definitely), I got up.

Getting around my house and preparing the picnic for my friend and I hurt. I also knew the more I kept moving, the more I will keep moving.

People say to me often, “you look too good to be sick” or “you do too much to possibly have anything wrong”. I think this will be my new retort. A simple picture of the inside of my refrigerator with six bottles of IVIG waiting for infusion next week with my bag of medical supplies where I’m a grateful owner of my own IV pole, IV pump, vials of steroids and Benadryl to be injected with prior to my infusion, a couple bags of IV saline, and a plethora of other medical supplies to do my infusion. I’m guessing most “healthy” people don’t keep these items handy. Does everyone keep this in their refrigerator? I sure haven’t my entire life.

I am absolutely not complaining. Since I fell out of my wheelchair last October and severely sprained both my wrists, I have been struggling badly to get back to my regular abnormal. I’m honestly sitting in gratitude that the past several days have given me 3-4 hours out of bed. It’s better than what it has been in forever. I’ve been very active several of those days. I’m glad to have been born with a body that is naturally strong. I wonder with myself at the fact that sometimes my visibly and invisibly disabled body can be stronger at many things than I ever was in health.

I know tonight I’m too tired to make myself the dinner I really need. I’ll settle for some fruit and nuts, my evening supplements, a medication for spasticity, and another I take for Epstein Barr virus. I’ll crash for 10-11 hours making it probably about 16 hours of sleep for my day.

As I said, I’m grateful for having the ability to do wonderful things. My Facebook feed will be filled with a false representation of my life’s entirety, but isn’t that what Facebook is for? If there’s one thing I know about social media is that you can’t win. I might not be winning at blogging, but my stats show otherwise.

So beautiful hiking photos aren’t quite right, but I also know for me, it’s what I like to remember too. I will take my intense fatigue and misunderstanding of many to know my reality. I take incredible care of myself through my strict anti inflammatory diet, exercise, and maintaining hope. I don’t hope for perfect health. I just hope to continue as I am. I hope to find the wherewithal to do more than go outside. If not, I have hope that I will continue with at least that. I know hope as more and more people understand and embrace me when I explain that sometimes I absolutely can and others, I absolutely can’t. The best words I get in regards to how my body operates in such extremes due to the nature of my illnesses is, “Lizzie, I understand” and get invited again.

I push through the pain as I might be debilitatingly exhausted at the moment, but my back hurts less, my heart feels full, I’m proud of the 4 total hours I was up today. I will joyfully fall asleep with the good memories of my day versus thinking of my spastic legs and the pain it brings. I’ll have content dogs if I can get some energy and strength to make them dinner.

And tomorrow, I will take my medication for my autoimmune fatigue that allows me the energy for wonderful moments of movement to do it all over again as that’s what I do. Along with being called “attention seeking” and that “your illnesses are fake”, I have also been called brave, tenacious, admirable, a warrior… I will choose to remember the positive of people who admire how I embrace a painful and messy life. We all deal with hard stuff and if watching me get through mine helps you manage whatever you are going through, I happily embrace my naysayers too.

Now I have to get back to sleep. Warrior through the difficulties. No one said life would be easy, but there are plenty of moments that make it more than worth it. Take care of your basics during a pandemic and work to feed your soul just a little however that looks for you.

Love

Lizzie

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