Y’all, it has been a holy hell, beast of a week, with all kinds of new and exciting symptoms manifesting – yay, autoimmune disease – and old foolishness rearing it’s ugly head too. All I have for this is “What the Frack?”
As it happens, it’s also Invisible Illness & Disability Awareness Week – that’s what the Instagram has told me.
And that’s really important to me. So let’s talk about the craziness I’ve been experiencing and also how it relates to the experiences of my people.
But first, let me tell you that this entire post is brought to you by Lady Gaga and Bradley Cooper (who has some pipes!). I discovered the soundtrack to A Star Is Born on Apple Radio and have All The Feels for it. It’s on repeat right now.
And this song, y’all. Just this song.
I’ve heard from my fellow teetotalers that the film is beautiful and hard and amazing and to take all of the kleenex – and I cannot wait to see it, especially now. Oh my heart.
All that said, I am celebrating this hard today, because, this week, I have crawled to it with prayer and deep breathing and valor and bloody knees:
So, what’s up with the invisible illness? Well, as I wrote about earlier this week, I have been laid out, ridiculously bedridden, damn near helpless it seemed – from a cold. That was just insane. And now that I’m upright, I need to take my methotrexate shot again. #fixitjesus
Beyond that, it seems that my cluster headaches and maybe even migraines that I HOPED were gone away have come back to visit. Let us ALL please pray that isn’t true.
And my anxiety has exploded – like, driving down the interstate, breathing in the Valor, exploded. When it rains. . .
The good news is that I was on the interstate in the first place – having made it out of the bed – to go see a dear friend before she had to return home to Tennessee. And Sara and I had a wonderful lunch with her yesterday:
And, of course, Mellow is one of the Mother Ships. I was excited that the Wizard Mushroom was dressed up for Halloween – because I am a dork:
And my sweet Chani gave me the MOST perfect gift:
We were also able to stop by another of our Mother Ships, Golden Temple, for some tea:
I grabbed a bottle of this amazing Kombucha:
And I adore vintage and vintage-y sunglasses – but usually they are crazy expensive. GT had a pair of Janis sunglasses for $4.75:
And what happened after eating and going to Golden Temple?
So, how does this all relate to Invisible Illness and Disability Awareness Week? Well, I imagine in the pictures of me sitting at the restaurant and of my face in sunglasses, I look like your average person. At Mellow, until I got up to walk and hobble, no one would have known I had any health issues.
No one would have known about the damn near head-to-toe just exquisite body pain or the broken feet or the hip or the headaches or the anxiety or heart murmur or celiac disease and food allergies and tachycardia and diabetes or any of the other seemingly million things that come with my RA and whatnot. It can be overwhelming, it makes me quite ill, and, often, if I’m lucky, for awhile, I look okay.
The same is true for so many of my fellow spoonies.
Some are physical illnesses and some are mental illnesses – but they are all so challenging to live with.
Just to take a quick break from all the heaviness, on a funny note, when I went back to find the above image I had seen before for this post, I found the perfect Valentines for my husband next year. They all apply:
Sometimes you just have to take a break and laugh.
Realistically though, this is the bottom line about invisible illnesses:
And, for our pain and explaining our symptoms to other people, this is the best explanation I’ve seen:
Also, here is a helpful link to article called 10 Myths About Chronic Pain that I highly recommend if you have a loved one who lives with a chronic pain condition, because I know it is difficult to understand at times:
So, what do we do?
We see a million doctors and take an endless amount of medication it seems.
We learn to accept new limitations we never thought we’d have – or we have them much earlier in our lives than we could have ever foreseen.
We educate others and ask for patience and understanding.
We stop and cry and we do lose our shit sometimes – it’s just hard.
Then we get up. And move onward.
Finally, at the end of the day. . . Always Onward.
Be well, everybody. Take care of your people.
Grace and Blessings.