Some of you have asked, so here it is. Time for Crohn’s talk again > Fatigue…
Overall, when people ask how I’m doing, I’m doing fine…not optimal, but certainly not anywhere close to being at my worst. My GI symptoms are minor, which, once you’ve had an IBD flare up, anything short of that seems to be tolerable….and my kidney function continues to hang out where it’s been for the past while.
But the one symptom that I continue to fight is fatigue. For those of you who also feel the effects of autoimmune fatigue…I get it, I’m in the same boat. Some days are better than others, but every day is just a scale that ranges from tired to pure exhaustion. Some days I feel like I’m on the brink of getting sick; the inside of my head feels cold and my body is run down. Other days I feel like I’ve been awake for 36 hours, when in reality I just woke up. And, some days, I feel the desire to just stick my head in the sand. I wake up 2-4x a night and each time, the first thought that pops into my head is, “I’m so f*&%^ing tired.” I think I’m starting to forget what it feels like to not be tired and I think I’ve now recalibrated what “feeling good” means.
In any case, I keep telling my doctors (primary care, GI, and nephrology) that I’m tired and, to their credit, they keep running tests looking for the reasons why. Well, on my most recent visit to GI just about three weeks ago, my doctor ordered 100 different tests (urine, stool, and blood) and an x-ray. I didn’t hear anything for a little over a week and then, I got an email notification that a new prescription just shipped…and when I looked up what it actually was…fiber.
So, frustration seems to be the second worst symptom that I fight after fatigue… A day after the prescription fiber came, I got a letter from my doctor that explained she prescribed that after my x-ray showed I was, well literally, full of crap 😒
As for the rest of the test results, the letter explained that she (my doc) would send another letter once all the results of the various other tests were in. I actually have access to my lab results as they are done, they get added to a section in the online MyHealtheVet portal that the VA offers, but I obviously don’t have the credentials to fully assess what they mean. Which leaves me guessing and Googling until I hear from my doctor. The only thing I’ve been able to decipher so far is that a few of the immunoglobulin tests were high…which is no surprise with two autoimmune diseases, one of which is named Immunoglobulin A (IgA) Nephropathy.
So, perhaps fiber is all that I will be prescribed, but, who knows. I should be hearing soon from her on whether the results will warrant us changing course. In the meantime, I constantly work on being present and grateful for the energy (whatever level it is) that I do have, knowing that realistically, it will continue to decline as I age, if my autoimmune diseases get worse, or a combination of both. So, I may not be signing up for any more tough mudders, but I’ll continue to do what I can and appreciate each day.
So when you ask how I’m doing and I say fine, now you know what what fine means.