The short version:
– I am still ill with whatever hit me August 2015. Ill with severe fatigue, paresthesias (tingling — mine without numbness), and myalgias (muscular pain).
– I do not have a diagnosis. I have a few theories from various doctors, but no real diagnosis.
– I am still unable to do my usual work: voice teaching, singing, piano playing, composition.
– I am slightly better than I was, and there are theories for that as well.
The long version:
I am so fatigued that I am on a strict pacing protocol. Currently that means 7 minutes activity, 19 minutes rest, 7 minutes activity, 19 minutes rest, 7 minutes activity, 40 minutes rest. I am not weak, I can still do a downward dog, lift things, etc. But I am fatigued when I exert myself or stand or sit upright for too long. I currently have a rollator/transport chair. This means I can go to the library and sit when I need to and not have to spend the rest of that day AND the following day recovering from a trip to the library.
I have tingling & pain in my extremities, in my face, in my diaphragm. Some days it’s not there for a while. Some days it is so distracting that I cannot do anything but give in to it. Pain relievers do nothing for these sensations, though ibuprofen takes the edge off what I call my “faceaches” (like a headache but in my face).
I do not have Lyme disease, have passed all neurological exams with flying colours (which means it is unlikely I have MS). My GP thinks I likely have Chronic Fatigue Syndrome, my internist thinks I have a combination of low ferritin (I’m on a HUGE daily dose of iron), Post-Viral-Fatigue (with a 9-12 month recovery), and depression (do people with depression want to do things like I do? I think not). My neurologist thinks I have anxiety (and I, my psychotherapist, and my GP completely disagree) but has put me on the semi-urgent MRI waiting list (which means I should have one by the end of June). My psychotherapist thinks I am burnt out from a year and a half of intense collaborative work and teaching which is completely likely.
I am on a medication that partially acts as a 5-HT3 receptor antagonist. This is the only thing that has helped to reduce my symptoms so I can actually sort of function every day. This was found out by chance. No one knows why it is helping (though there are theories on that as well).
My day consists of following the above mentioned pacing protocol integrated with a set of self-care habits I track on Coach.me . I have a restorative yoga practice I devised through reading various articles on yoga as a treatment for Chronic Fatigue syndrome. Just in the past couple of months I’ve had enough cognitive energy to begin writing in my journal again. I meditate three times a day laying on the floor. I eat as well as I possibly can and have started tracking my calories because of a 20-pound weight gain. Ed (my husband) does all the grocery shopping and laundry. Jarrod (our son) does a large amount of the cooking. Our house is not at all clean and I’m okay with that at the moment.
I might be slightly better because of the yoga and/or the drugs. I might be slightly better because my nervous system is recovering from whatever virus may have attacked it last summer. I might be slightly better because of the huge dose of iron I’m taking.
I’m not better enough to do the work I was doing but I’ve found a sort of equilibrium and am usually content. Mindfulness and Stoic philosophy get me through my days. I’m OK. I’m not great, but I am OK.