09 | Recovering in hospital (post icu)
At that stage, I had lost around five stone in weight, my muscles had wasted away from being in ICU, and I was entirely dependent on others. Simple tasks felt monumental. I remember trying to sit up in a chair, only to find I could manage no more than five to ten minutes before the sheer pain and discomfort forced me back onto the bed.
The neurophysiotherapists began the slow, painstaking work of helping me rebuild. Because I had been wheelchair-bound before my admission and bedridden during my coma, my body had forgotten basic mechanics. I distinctly remember a session where a therapist had to show me how to swing my arms naturally while walking. It was a strange, humbling moment that brought home just how deeply the neurological storm had impacted my body.
During my stay on the ward I continually asked about my posture and spinal fractures. I wasn't seen by anyone with expertise in this area. My neurologist, who I only saw three times during my one-month admission, just kept saying there was "no acute action required at this time." I remember being visited by a friend on one occasion. As I stood up, I could see the shock on his face — I was now shorter than him at 5'8", having previously been 6'2".
Cardiology informed me that I required a pacemaker, and this had been approved by Neurology. They were concerned that my brain had turned off the electrical signal to my heart, so a pacemaker would keep my heart beating if this happened again. A couple of days before my discharge, I was transferred to another hospital for the procedure. It all went as planned, and I was conscious and watched on a monitor as they went in from my groin, up an artery, and placed the pill-sized device into my heart.
Looking back, my hospital recovery was a paradox. On one hand, I felt an immense sense of gratitude that I had survived the cardiac arrests and that the acute autoimmune attack had been controlled. On the other hand, I lived in a bit of a bubble. I knew I had a severe stooped posture and ongoing pain, but I was told by clinicians that my posture would gradually improve with time and physiotherapy. I had no idea about the true extent of the compressive fractures and thoracic collapse in my spine. I left the hospital believing that with physio, I would eventually return to my old self. There were no mirrors in hospital, and I had not appreciated the condition that the secondary injuries had left my body in, and the impact it would have permanently on my life.
What I Would Say to Someone Now
If you or someone you love ends up on a ward after a critical illness, don't assume that because the emergency is over, everything is being looked at. I was reassured, repeatedly, that my posture would "improve with time and physiotherapy." No one told me the true scale of what had happened to my spine, and I didn't push hard enough to find out — partly because I didn't know what I didn't know. If something doesn't add up, or a concern keeps getting the same brief answer without a specialist actually looking at it, ask directly who has reviewed it and when. It's also worth asking to see yourself in a mirror before you leave hospital. I left believing I'd basically go back to how I was. I hadn't understood that some of what had happened to me was permanent, and that understanding only came later, at home, without the comfort of a ward around me.
Technical Note
Following the acute autoimmune phase, my main issue on the ward was severe deconditioning: profound muscle wasting from prolonged critical illness and bed rest, sometimes called ICU-acquired weakness, which required intensive neurophysiotherapy to relearn basic movement patterns like walking and arm swing. The leadless pacemaker was implanted because of intermittent complete heart block linked to the two cardiac arrests, protecting against a recurrence. Although I had sustained thoracic vertebral compression fractures and rib fractures causing visible kyphosis, no specialist spinal surgical review took place during this admission — the changes were assessed informally as likely postural, and a formal spinal assessment did not happen until many months later.
