“‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.'”

Jeremiah 29:11

It’s been five years since I’ve written a blog post. Do people even blog anymore? The answer is an unmistakable “No”. There are Substacks and Reddit posts. Twitter is now X, Instagram has Threads and this elder millennial (without a TikTok account) is writing into the wilderness. Will anyone read this? My husband might. He has been pushing me to write an update on a previous post concerning our journey to find a diagnosis for his incredibly rare movement disorder. I relented because I received my annual notification that I will be billed for WordPress.

I do cherish you, dear Reader! If in fact, you do exist.

The shitty thing about chronic illnesses is that they are chronic. (Disclaimer: This blog post contains an explicative; should have written that sooner.) I have quite a few chronic illnesses, and am thankful that my ulcerative colitis is in remission (yay!), I am still seizure-free (yay!) and now just have to deal with puffing up like a blowfish due to my IBS and being severely cold all the time from my hypothyroidism. The hottest summer on record, while being detrimental and depressing for the planet, has been very comforting for my cold bones. Even though IBS and hypothyroidism are common for women as they get older, I got mine young. And now I’m older. I’m *shiver* middle aged. So they’re worse.

My husband’s dopamine-responsive dystonia (DRD) has not gone away and he still deals with intense nerve pain from his tight muscles who are getting some ridiculous signals from his neurodivergent brain. I use this adjective because his adult ADHD is also out of control. Between us, we have six doctors and a huge list of medications.

Each disease comes with a list of really weird symptoms, so throw Dr. Google in there, too.

The ADHD is awful. The inability for my husband to focus and contribute is a huge weight on both of us. Even the simplest task is like running into a brick wall for him. Take out the running. That’s too much effort for his brain and body. It’s like a brick wall falling from the sky and squishing him so that he is in pain (DRD) and cannot move (DRD and ADHD).

Most posts I have read for couples living with ADHD are about how not to kill each other. I’m crabby….all of the time. Even when I am having a great day…still crabby. I usually don’t feel good physically and my husband never feels good. He’ll have days where the pain is so immense that he cannot even talk or breathe to days where he can get out of the apartment for a short burst and walk around a bit. There are no days in which he feels truly good in his brain and body.

I still remember when I used to depend on my husband for some things, and remembering that and having that old expectation leaves me resentful. So I have to let go of those memories and those expectations and deal with the here and now.

I know, Reader, it could be worse! It’s not a terminal illness. I keep that perspective, I do.

So, when you are in the chronic illness rut, confusion still reigns. Where do we go from here? I have no choice but to hound doctors for appointments, tests, referrals…in the never ending hunt for the next answer.

Five years ago, I thought we would never be running in this circle five years later. I would never have thought of myself as a wife and caregiver.

I was naïve. Here I am again, though. I’m freakin’ hopeful! Why? Because I have this unrelenting trust in God. There is a reason why we are going through these trials. So, I have hope that we will emerge from them in a better place. A healthier place? At least a less crabbier place.

In five years he’s got to be healthier. In five years I’ll be better. A better wife, a better partner. We’ll be able to go on dates on the weekends more often. We’ll be able to be more outdoorsy! We’ll travel more! We’ll be happier and healthier…

…and then menopause will hit.

Reader, I am only joking. I won’t get menopause. I’ll be that rare woman who just never has symptoms! And if I do…the hot flashes will warm my cold bones!

Okay, is that less trust in God more just being naïve?

If you live with chronic illness or with a partner with ADHD, feel free to vent and comment below.