How are you?
How am I?
I am O.K.
I am not sure how I am.
This is a hard question for me.
For the last six weeks I have not had normal sensations in my legs, my feet, my fingertips.
I wish I could show you the way they feel, the vibrations and tingles and spasms. It is difficult to share this strangeness with you, to conceptualize it, to explain in a way that you can understand.
Six weeks of waking up to discomfort with no escape.
It is even difficult for me to identify these sensations, or remember what things felt like before. Some days the strangeness does not bother me as much; other days I want to give up or rebel against all things.
What is it like today, you ask?
I don't know. I don't know. I don't know, I am trying to think of what to say. I am tired of thinking.
Today my body aches painfully. It could be withdrawal from the medication I was taking, combined with too much physical activity lately.
(Which has been a fraction of the physical activity I used to do. I have not gone to the gym for almost seven weeks now. Seven weeks. I love the gym. It is my time to decompress --now I live in a state of compression.)
What are my days like generally?
My routine is clouded by medical reminders. I carry around a pill box with me, every day. Last night I discovered that one of the boxes had opened, and in the dim light I emptied my bag and searched for pills that fell into the folds.
I make myself healthcare checklists to complete - call this doctor, acquire this form, change this information, transfer this document. I was better at these things in the beginning. It has been three and a half months since this all started though, and I am exhausted.
I am sorry I cannot focus.
(I am sorry, I am sorry, I am letting you down, I think. I try to respond, try to listen, try to study and be active but my energy is receding. I cancel plans. I stop making plans. My days are too uncertain, my health and energy is uncertain. I am sorry I am disappearing. I am less fun less interesting less me these days.)
I am losing my train of thought. Sometimes I struggle with focus, sometimes around people, or when reading or in overstimulating places or at the end of the day. I can be doing so well, getting work done or maintaining conversation and then my focus slips away. I don't even realize I am losing it until it is gone. My mind goes blank and I have trouble finding the right words to use.
Did that answer the question? Maybe?
Are you feeling any better?
Yes, I am. I absolutely have been feeling better.
I know I feel better than I did five weeks ago, in the week after my lumbar puncture. That week I could not be upright. When I sat or stood up, I had a pressure headache that ached heavily. Instead I lay in bed trying to study for my Systems Neuroscience final, my one final that was in Hebrew.
(I need to retake that final but I am proud that I took it the first time, one week after the lumbar puncture. I am proud that I took the other finals I had and I am done with those.)
I am better than I was four weeks ago, when I saw my neurologist and told her, in a panic, that the sensory issues had started again in my left leg. The tingling numbness jitteriness returned, except now it had extended to my right leg and was worsening daily.
I spent the whole morning at the hospital that day - first at my appointment with her, then waiting for two hours for my health insurance to approve treatment, and then at the infusion center, where I received my first high-dose of methlyprednisolone (a corticosteroid). For the following eight days, I continued to go to the Neurology outpatient unit to get my infusion. On Friday and Saturday the outpatient center was closed and I went to the Neurology ICU instead. There I sat alone in the hallway, on a blue chair near the nurse's table, IV in arm.
That week my arms became dotted with marks from many failed and successful attempts. My left arm, as I found out, does not have a very cooperative vein.
And three weeks ago - oh three weeks ago I was a mess!
My body was flooded with corticosteroids and my mind was so disorganized, so anxious and crazy. Steroids are the worst (more on that in a different post).
Two weeks ago - things were starting to improve. I continued taking the steroids but at home in pill form, instead of at the hospital.
And one week ago I took my last dose. My mood is better and I think my body is better, but it is hard to tell with these things. This last week I have been feeling the effects of withdrawal (fatigue and muscle cramps and weakness) but it is improving, I think it is I think it must be improving.
I am thinking better than I used to. I am walking more. I am optimistic still, despite the current discomfort and pain. Things will be normal again. Things will really be okay.
Well that’s good at least. You sound good!
As you saw, it's complicated.
I am good. And I am trying to sound and look and be well.
There are so many good things, little treasures I gather each day. I am sitting at my favorite cafe now, next to a good friend of mine. We are outside under a shaded alcove but ahead of me I see the brightness of a clear sunny day.
There are many other good things -
I had a birthday party recently, an art party with paint and clay and an array of materials, with drinks and dancing and wonderful people.
I go to the beach, to walk along the water or toward Yafo and feel calmed by the blue of the sea and the sky.
I see friends and I journal and I keep doing the things I can do.
I feel better talking to you. I may not know how to answer these questions, but I want to be asked.
When I am alone, that is when the uncertainty and anxiety strikes. That is when I sit and feel the brokenness of my body and the cracks in my life here.
That is when I begin to break.
I saw your posts on Facebook.
I am glad. I posted it for you.
They are for you to see and read, if you are interested.
I still feel conflicted about posting things, unsure about the way I have been relating to Facebook. I look at my profile too frequently and --
-- there I am, smiling and sincerely happy in these photos.
Facebook profiles are interesting (...cue much longer conversation about social networks and media etc.). They are (generally speaking) curated presentations of what we like best about ourselves, a way to control the way we are perceived by others. And I have always felt a mix of self-conscious shamefulness in how I have used Facebook, how I care about my curated image, how I let time waste by while I scroll down and down.
Lately I have been feeling emptier, more hollowed out. Those things that gave me confidence and whole-ness (independence, freedom, physical strength, academic and work skills, ability to support others emotionally, health!) - these are things I have been losing. It is frightening and isolating. As the things that give me validation in real life are disappearing, I have found myself staring at and trying to find validation in my online self, as if to say - look! That is still me, that happy person captured in that frame, she exists.
Since sharing the first post about my health, you have been reaching out - in 'likes' and posts and private messages. In little and big and varied ways, you have sent your support.
I want to thank you for these things, they have been like drops or marbles that fill up the hollow spaces.
(p.s I know sometime it takes me time to respond to messages but a response will come)