“You seem to be doing better; are you going back to work?”
Returning to work after time off due to flu, is expected. There might be a day or so of feeling weak, but it’s soon forgotten as the body springs back into action.
Recovery from a debilitating illness, however, takes time. There are, according to my doctor, stages of re-entry.
For two and a half years, my life was defined by the struggle to just get dressed each day (a routine I stubbornly adhered to) and to manage food – preparation and consumption. I had to depend on my husband and outside help to complete ordinary tasks, and interaction with the world beyond my bed was very limited: no television, no reading, no talking on the phone for more than fifteen minutes, and constant bedrest. If I left the house for a medical appointment or treatment, the effort could set me back for days or weeks.
Gradually, almost imperceptibly, I started to regain some stamina – able to sit up for longer, managing to cook some of my own meals (as long as someone else did the prep work), and desiring of social contact.
“It’s important that you start to get out of the house,” my doctor advised. “Not to do chores, but to have tea with a friend.”
My first outing, with a friend who is very understanding of my condition, ended abruptly, as having been sheltered from noise, lights and smells for so long, I felt overwhelmed, and too sick to continue.
With persistence, I learned to avoid noisy places. When the weather was good, picking up a tea and taking it to a local park became a good option. To be back amongst the living felt rejuvenating, hopeful.
In time, I could stay out longer, and became more adventurous – having a meal out, or daring to venture into a store. The first time I was able to go grocery shopping felt so liberating, even though I could only manage a couple of aisles.
Myalgic Enchephalomylelitis strips the victim of any sort of normalcy, reducing life to a bare minimum existence. Coming back means rebuilding – slowly and one step at a time.
“Travel is the next important step in the healing process,” my doctor told me. “Most would say work is, but work has stress and the body is not ready for that yet.”
We booked a summer getaway – two nights at a cottage – but the worry about what to bring, and how to pack set me back and we didn’t end up going.
So, my husband booked an inn, where meals were served and housekeeping available. The travel alone made me too ill and I ended up staying in the room, but the change of scenery was wonderful and room service ensured I got the food I needed.
It took us three days to get me to a port for a cruise. One day to drive to the airport, and then rest; the next day to fly out to Miami, followed by a crash; and the third day to board the ship. While I didn’t get off the ship to explore the Caribbean islands, it was amazing to be on the water in a much more soothing climate. We did, however, rule out travel involving planes, when we returned.
“You can expect a return of about 25% of your energy,” the doctor advised me.
I think it is fair to say I have experienced that, and on some days, maybe more. Since we have been travelling across country in a motor home, I have discovered new passions, and thanks to my constant companion, have been able to get out into nature. Certainly, in Arizona, I was able to walk greater distances, and felt as if healing was a real possibility. I have re-engaged with purpose and am starting to build new routines that inspire hope.
The question is: Is this renewal sustainable? As we head back into colder, more humid temperatures, my decline is perceptible.
“I feel it too,” Ric told me last night, when I expressed my frustration. “Let’s just hope that the strength you experienced in Arizona left some lasting effects.”
“I have been talking to some people here, and we all agree if you can travel, you must be well enough to return to work,” a friend tells me.
The remark ignites a rage in me. None of these individuals has any knowledge of ME, nor my day-to-day struggle. They have never had to come back from anything so tragically destructive.
Restoring physical health is just one part of the process. I have reduced cognitive functioning to learn to deal with, as well as the inability to deal with stress (compromised adrenals) which will have to be sorted out before I can be considered employable again.
Ric just shakes his head when the conversation of work comes up, but I am not so certain. I have worked, in one capacity or another, for fifty years. Setting foot in a classroom again may not be in my future, but I am still leaving the door open.
In the meantime, in order to honour my body, and the healing process, I am taking it one step at a time.