Burnout

I was following a thread on chronic illness life, this morning, and I ran across a post about chronic illness burnout. That is precisely where I am right now. I just want a vacation from my body. A break from the daily routine of meds, tubes, pumps, formula and fluids.

I know it is not about physical exhaustion, because I don’t feel the same dread when it comes to getting David his food or his meds. But when I even think about having to flush a tube or hook up or disconnect from my feeds or fluids, I just feel like I am carrying a 10 ton weight on my shoulders. It takes an act of will to get me moving.

Unfortunately, these are all things that are necessary to keep me alive and the exact opposite of optional. So, I continue to do what I need to do, but it is just really hard.

This will pass. I am just having a particularly difficult time right now. The daily grind of living with the kind of pain that guarantees tears at least once a day is really taxing. Knowing that relief is out there, but that I am being forced to wait 4-6 weeks for relief because of a circular and arbitrary decision made by our insurance company doesn’t help.

I am not living with the deep uncertainty that most people with level of debilitating chronic illness that I have because I am not reliant on medicaid for my health coverage. And I am most certainly not doing this alone. I am privileged to have very strong support both financially and emotionally. Our insurance is through the ACA, and at least for the moment, that seems secure. I could not imagine having a better life partner than David. And Xena Malka has been extra generous with her cuddles lately.

But even with all that, living this life, with my days scheduled and defined by necessary medical self care, can feel stifling. And I am struggling to find joy in my life. I do not feel up to spinning or fiber crafting right now. And I don’t see that changing in the foreseeable future.

Reading novels has become a challenge again. I subscribed to Dracula Daily (thanks, Lynn!) where I get the Bram Stoker novel, comprised largely of letters and journal entries, sent to me on the appropriate dates. That I have been able to keep up with. Things apparently get very busy in October, so hopefully I am feeling better in time for the deluge.

Music is touch and go. Some days I am ok and others, it is too much. Luckily, it is baseball season, so that provides some welcome distraction. More so when the Red Sox are playing well. Which they just aren’t doing consistently. I am told this is what life is like being a Red Sox fan.

Very unusually, I have not been beset with earworms lately. That is what probably created the space in my brain for my new theme song. So far, the lyrics are just “Triple-tubed Girl” and I just kind of repeat them in my head when I have 3 tubes coming out of me at once. I even created a logo for myself. If any of my artistic friends want to make it all pretty for me, that would be awesome.

There are two PICC line lumens sticking out of the arm of the big T. Inside that is another T and neat to that, on the outside of the big T is a capital G, with a G-J tube sticking out the belly. In other words, It’s Meeee!