Content warning: sweary language and complaining. Also: I’m not looking for advice, thanks anyway.

I am so tired.

I should be doing other things right now. As a full-time freelancer, any time spent doing something other than paying work feels wasteful.

But I’m called to write for myself today. Because I’m so fucking tired. I’m so tired I didn’t even give this post some catchy, SEO title. Or even subheadings.

People who live with chronic illness are aware of the fatigue. It’s a struggle to convey what it feels like, however, because it’s more than getting a poor nights’ sleep or having a long day or a long week.

It’s more like having a long, painful life with poor sleep every single day after running a daily marathon.

There’s lots of tips and tricks and advice given out to deal with the chronic illness fatigue. I’ve written many of these lists myself. They include things like: reduce stress, avoid screens before bed, do some meditation or yoga before bed, avoid caffeine during the day, and don’t drink alcohol.

Doesn’t sound like a very fun life to me. It also sounds unrealistic. With a complicated illness like IBD, and I don’t have to remind anyone who lives with the disease, so much time is spent managing it already. There’s the daily intentional movement, taking medication and supplements several times a day, preparing most or all of your meals yourself, scheduling appointments, going to the appointments, and trying to manage stress while also working because insurance covers nothing even after you’ve met deductible.

Plus: tracking all of these things, including symptoms and bathroom trips, in preparation for the appointments. Oh and the economic anxiety because of the copay accumulators that are fucking us all and the lost wages while dealing with all of the above.

And the very last thing, which is absolutely galling and frustrating, but something I can do nothing about: getting older and being in the menopause. The. Menopause.

In short: it’s a shitshow. And at the end of all of this, the fatigue is still there. Even when in remission. I’m currently in histological and clinical remission from the IBD. The extra-intestinal problems and the fallout from having complicated abdominal surgeries is still there, but at least there’s no blood or mucus or (too much) diarrhea.

So, yeah, I go back to the lists that I’ve written, or that other people have, for advice. I lift weights, walk circles around the neighborhood in my weighted vest, I take vitamin D, inject vitamin B12, and drink so much water it feels like I’m a one-woman drain on the public water system. I don’t drink coffee after 10AM, I take hormone replacement therapy, I do the box breathing, stop eating several hours before bedtime, and all the other things too. I even went for iron infusions, which meant I lost a day of work every single week.

It doesn’t fully deal with the fatigue. It doesn’t stop the painsomnia. It doesn’t help me find more hours in my day to do all the things I write on the lists.

Treating the IBD and addressing vitamin deficiencies are the pieces of advice that are most often given for helping fatigue. Maybe checking your thyroid levels or whatever other labs. OK. Done.

But now what? Now I’m left with trying all the other things, hoping I’ll finally find that one thing or combination of things that helps manage the fatigue. I’m running out of hope, though. Truthfully, it’s been decades.

And I refuse to accept this statement, which has been said to me more than once: “you’re a mom, so you’re going to be tired.” That is such bullshit.

The truth is that we don’t have any answers. We don’t. They still need to be found. And until we are better supported economically, mentally, and physically, the fatigue will simply still persist. It just will. Because I can’t sink any more hours of my day into trying to solve it. I have to work, in order to get paid, so I can afford the medical care I need to avoid having my intestines close up on themselves.

I like to leave people or situations or spaces better than how I found them. In my podcast, we end with a light topic we can laugh about. In blogs, I end with a tip or a call to action.

Here, I’m breaking that rule I’ve set for myself. Because I’m too tired to write any more lists about all the things that supposedly help with fatigue, but which would take hours of your day, every day, to complete. Society isn’t set up for us to have it all.

I didn’t make myself sick. You didn’t make yourself sick. Your loved one didn’t make themselves sick.

But here we are, and we are tired, and the thing we’re most tired of is faking being well, while our basic needs are not being met. The researchers who finally get to the heart of the fatigue and offer us some relief will be heroes.

In the meantime, I’ll walk around the block in the morning, take my vitamin D, inject myself with vitamin B12, lift some weights, take my morning medications…