Hi there. I know, I know. It’s been awhile. Too long in fact. I hope things are joyful in your world. Between going back to work (over 2 months ago), and dealing with this severe fatigue, I haven’t really done much at all besides try to get to work each day. Nothing to write home about, you know? It’s kinda boring to write Hi Guys, I still have Chronic Lyme, Chronic Fatigue, and Fibromyalgia and some other stuff. And even more boring for you to read! But we’ll forge on.
While things at work are going well considering my limitations, I’ve been struggling physically and emotionally, mostly because, well, first, we are getting close to the 4 year mark of this diagnosis and the beginning of treatment for said diagnosis. And, yes, as I’ve shared before, there has been progress made, man, it sure feels like it hasn’t been much. I mean not much for a 4 year mark. As the patient, it is very difficult to be objective about measuring “progress” as well. Another reason I have been struggling is that the severe fatigue is back, yet again.
There’s no way to plan when dealing with severe fatigue. I can’t rest one day, and then feel so much better the next. I can’t save up energy to use as I would like to. Not that there would be much energy to save up at this point. Still, if I could save up energy, I would totally be strategically planning! But, severe fatigue is somewhat or more like always unpredictable. Anyway, it’s back and rearing it very ugly head!
As many chronic fatigue sufferers try to explain severe fatigue to a “normal” people, there don’t seem to be enough metaphors nor analogies to clearly describe what severe fatigue feels like. The Spoon Theory is a good start, but on some days, we have no “spoons.” So we get up, maybe, and start the day with a zero balance or a deficit of energy. And this just keeps going on, day to day. Month to month. It can be a spirit breaker for sure.
My doctor, at least my local doctor, looks at my labs and says, “yes, of course you are having severe fatigue.” All the numbers doc watches are low when they should be high. The EBV is flaring again, so that adds to the crazy chemistry going on in my body. Inflammation markers are off the chart too even with my dietary changes. Add that to the fatigue as well. Doc tells me to keep doing the B12 shots, the ATP Fuel, the Glutathione shots. I say, OK as I wonder when I might be able to make it through a day without feeling the crushing tiredness. I know (or at least keep the flame of Hope lit) that this cycle will end but sometimes it is hard to remember when every day, every hour is weighing on me like a heavy stone.
I feel bad when my friends ask how I am doing. They try to keep up with me, but I move at a snail’s pace anymore with nothing new to report for months, and now, for years. They ask, How was your weekend? Are you ready for the holidays? What are you doing next Saturday? And right now, unfortunately, I honestly don’t know how to answer.
- How was your weekend? A: It was great. I spent most of it in bed.
- Are you ready for the holidays? A: My head explodes, LOL – God, no.
- What are you doing next Saturday? A: Uhm, I think I have an important appointment scheduled – with my bed.
Speaking of my bed, I need to go change the sheets and get it made so I can climb back up in there. Hoping this Sunday brings you cooler weather and happiness crafted for the soul.
P.S. Thoreau makes me happy. I hope he makes you a little happy too.