Three weeks after the event I hit a wall. Up until then I had been able to see and feel the difference in my facial muscles as they began to work again but suddenly this changed. I think mentally this was the hardest part of the whole process. It was here I began to consider that this really might be ‘as good as it gets’. Despite this ‘as good as it gets’ being really good for three weeks of healing I could feel myself becoming a quite dispirited.
By this point I had almost all movement back in my mouth. My lower jaw was back to normal but there was still weakness in my upper lip. I could smile, show teeth, eat pretty much normally but if I yawned or tried to open my mouth fully I could see and feel it wasn’t right yet. I doubt anyone else could unless I pointed it out but I knew and that was enough.
My eye could close and blink but was still getting dry and so eye drops were my best friend. I could move my eyebrow and forehead to some extent by now but the muscles above my eye lid were not fully working still. Again I doubt anyone else would have noticed this but again I knew. I also recognised that I would have to make a decision within the next three weeks about whether to keep my follow up with the eye Dr at the hospital. I had been told I didn’t need to go back if my eye was ok but how would I really know?
I kept telling myself that as I could still feel crawling and tingling in my face and so healing was still taking place but not being able to see it, only what still wasn’t right, was hard. I assumed that the reason I couldn’t see any changes was because it was the fine muscle movement that was being reactivated and that a) this was less visible, b) would take much longer or c) would not happen. Did this help? Not really if I am honest.
I made the huge decision at the three week point to stop taping my eye at night. I was worried of course about my eye opening during the night, scratching the cornea on the pillow or eye mask but knew I had to be brave enough to do it at some point and not let it become a crutch. My eye was closing easily and staying closed so the sensible part of me knew there wasn’t any risk really. I continued to use the Vitamin A cream and the eye mask to protect the bed linen but the tape went.
This week was also the week I was easing my way off the high dose steroids, one less every day and a lot of how I was feeling in terms of my mental state might have been connected with this. I now appreciated why people might benefit from counselling during the recovery period especially if this phase lasted for months or years, or if there had been little or no improvement. I discovered an online weekly meditation group and joined that via Zoom. This helped me enormously as it was mindful, gentle, gave me time out each week and something I could use any time I needed to get out of my head and give myself a break.
As I came off the steroids I found I was able to do a little more each day. I wasn’t as bone wearily tired despite only getting 5-6 hrs sleep each night. Insomnia was listed as a side effect of both the steroids and antivirals so I suppose I was lucky to be getting this much sleep really.