Maison Lynne

“Showering and bathing is often a luxury in self care to individuals with disabilities that others may take for granted” - a quote by me (and graphic by me as well)

For me, personally, showering is one of the hardest tasks I have to do in my self care regimen, and overall. It takes a lot of work for not only myself, but especially for others who are helping, such as my mom most often.

Having so many physical limitations and health struggles in general makes showering taxing, as I deal with so much intense all over chronic pain and chronic fatigue to begin with that showering itself causes things to flare up even more across the board of my symptoms. Yesterday was a shower day, today was my off day, and tomorrow is a shower day again. I dread it every time, but I have such a strong desire to stay as clean as possible despite this.

I’m both grateful for and abhor my shower seat, while it isn’t a perfect option for my conditions, it at least allows me to sit. I’m grateful we live in a world where there are so many self care products that I can use on off shower days to help me feel at least somewhat normal. But I still dread it. And I know for an obvious fact that I am not the only disabled person to have showering/bathing struggles.

Fingers crossed tomorrow goes as smoothly as possible 🤞🏻

On a secondary note, in a future post I’d love to share shower day products and off shower day products so keep your eyes peeled for that!

Gotta love that started a trend! Can’t wait for the new single! As you can see me sporting a TH shirt in 2008, I’ve been a fan for a long long time lol!

It’s still something I am working on normalizing in my brain after 30+ years alive: it’s okay to be not okay (among many other related feelings)

Dealing with the hand I’ve been dealt from birth and onwards with my physical and mental health has been undeniably the hardest parts of my life overall, and these things leave me more often not okay than actually okay.

PIK3CA-Related Overgrowth Syndrome, an inoperable pelvic mass relating to my overgrowth, severe chronic pain of all types through my whole body, chronic fatigue, metabolic disorders including hypothyroidism, PMOS (previously PCOS), arthritis, generative disc disease, disc herniations and permanent spinal damage, probable hypermobile Ehlers Danlos Syndrome, a high chance of accompanying POTS and MCAS, bipolar I, generalized anxiety, major depressive disorder, and PTSD. These diagnoses make up my life, they unfortunately control almost every aspect of it and not by choice, so it’s no wonder why I’m often not okay.

Since starting therapy again, doing things to manage and document my physical and mental heath disorders better over the past few months has led me to a better acceptance of the notion of it being okay to not be okay, I feel often very lost, and you know what? Who doesn’t in this big wide world? That is okay too. I do my best every day, and that is enough for me, and it should be for you too. You are doing the best you can, and that is enough.

The song by Nighbirde (may she rest peacefully) called “It’s OK” has the lyrics of: “if you’re lost, we’re all a little lost, and it’s alright…it’s alright”. Sind stumbling upon her music quite a few years ago, before her passing, her songs touched and continued touch and inspire me to keep going. As a little something the other day, I made a little digital graphic to highlight these lyrics for the fun of it, and I love how it turned out! I highly recommend anyone check the song out, and be kinder and more gentler to yourself today and everyday, I know I am trying to ❤️

Are you hard on yourself for not being okay?