IG vs. Reality

I’ve been (relatively) absent from social media lately.

My life is at a weird transition point that is taking years.

Most of this has to do with my worsening disability. If you’re a regular Muddler, you may know that I deal with autism, POTS (Postural Orthostatic Tachycardia Syndrome), and EDS (Ehlers Danlos Syndrome). But lately my biggest issue has been ME (Myalgic Encephalomyelitis).

Like many who deal with ME, I am finding every day tasks (showering, cleaning, surviving) difficult and additional tasks (posting or “working” in any capacity, traveling, maintaining community and relationships) almost impossible. I recently saw a study (thanks to brilliant @jendomsick and @sunrequiem who post great resources on this stuff) that says people with ME have a worse quality of life than those with heart & lung disease or cancer. That definitely feels true to me.

I am privileged to have a financial support system and caregiver in my partner. I have access to aids like a power wheelchair, adjustable bed, and service dog that many people do not (but everyone should). While they all help improve my quality of life, none of them are able to get me even relatively close to the level of function I had just a few short years ago.

In addition to all of that, I am still a mom. While my boys are both almost adults and mostly tackling their own adventures, it’s important to me to still be a support system to them.

This is how I discovered that parenting young adult children can be challenging. My oldest (Tucker, almost 20) has been home for the past month between the end of his second year of university and the beginning of his first internship across the country. This means him and his stuff are in a semipermanent state of being scattered across my home in preparation for a 2 month stint in Mississippi, followed by less than a month here, and another move to his apartment at school…all of which come equipped with different amenities and require a different packing list.

The mental state which we find ourselves in is a similar shambles. Armed with an ADHD diagnosis and prescription, but still having difficulty staying on top of filling the RX, Tucker’s executive functioning can struggle at times. Plus he’s used to living on his own or with other young men, which are a different set of living standards than I like to keep in my home. It’s all a mess.

It’s a mess I wouldn’t trade, but it presents an additional challenge.

Finally, we still have George, the big reactive dog. While he continues to do at home service tasks every day and make slow progress around some of his reactivity, he isn’t the worry free public access dog I was hoping for and finding a care team (vet and sitters) has been an epic challenge we haven’t completed yet.

I am really hoping we will keep making (VERY slow) progress in all these areas and I will eventually be able to post more. But for now, the struggles of every day life as a disabled person who cares about other complicated creatures is taking everything I’ve got.