A year in my changing body

I got my first mole map done about a year ago, because it seemed like a thing that grownups should do. Particularly redheaded grownups, who are prone to unforgivable inconsistency with sun protection. All went fine - the moles I thought were weird were actually considered perfectly normal, and the ones I had never looked twice at required a repeat check-up, but ultimately my skin was deemed benign.

At my second annual mole map earlier this week, the nurse noted a new mole - on my chest, likely the result of a summer sunburn - and two old ones that had grown bigger. In the process of perusing and poking my naked body, the nurse also pointed out other things that had changed. Like a new tattoo, now surrounding a mole (I always ask tattoo artists to avoid tattooing over my moles, for this very reason). And the three new scars on my belly, from having my appendix removed. "Wow!", she exclaimed, "that's a big one!", eyeing up the several-inch-long red scar that now sits below my belly button.

While I waited for the bus back home, I was struck by how many things had changed about my body in one short year. Yes - I have more scars, more tattoos, and apparently more moles. My hair is longer, and I cut a fringe. Wrinkles are appearing around my eyes. I have lost weight (for a variety of complicated reasons, that warrant a whole other conversation than this one). And not only that - I became ill. With two new chronic illnesses, my body become a far more fragile and precious thing, to me. Like a child I have been unwillingly tasked to care for, I love it and resent it anew. At the same time my body has become like a prison guard for my mind. It dictates my daily routine, strictly, without regard for what I want or need. It is not a friend, but it is my closest companion, for better or worse. Becoming ill seemed to sever my body from my mind - where once I felt that they were all a part of me, I now felt that my body was a separate (though entwined) entity. A responsibility.

It's odd, because I was chronically ill and disabled before last year. Those illnesses, though often influencing my decisions and daily life, felt like little beasts I needed to battle. This past year was the first time that it felt like my body, rather than something that had been visited upon it, was itself the problem. To get scientific for a moment, when I was researching ME/CFS a while back, I encountered this phrase: "the profound, crushing fatigue...is the result of a catastrophic failure at the cellular level". Profound. Crushing. Catastrophic. Failure. In the very building blocks of my body, there was profound, catastrophic, failure.

In a way, I have been very lucky. My ME/CFS, so far, has not progressed beyond what's called a 'moderate' stage. At that stage, I spent most of the day in bed. Outside of work, I did almost nothing. Josh provided me with food, and ran around the house grabbing things for me. I stopped showering as often. When I did shower, it was sitting on the floor (too proud to buy a shower chair), and I would have to lie down afterwards, because I felt so tired I would often cry. I largely stopped seeing friends. I had to stop doing my hobbies. Sitting at my desk to work on my journal would send me into a crash. I held tightly to hope that I would regain some capacity, even that I might be one of the rare few who recovers from ME/CFS entirely. This was only a few months ago. I am currently at a 'mild' stage of ME/CFS - I have regained the ability to do almost all of the things that had stopped when I was 'moderate'.

It's only because I have gained some capacity that I even feel able to write about this. When you are deep in illness, constantly on the verge of crashing further down, you have to grip onto hope, holding on with your fingernails even as it feels like it's been drawn from you daily. When all the people you love, the things you love, everything, is too hard and too tiring, who do you become as a person? I had begun to feel fear when I had plans with friends, not even able to look forward to it anymore, knowing it might leave me more ill for days after.

I have yet to experience severe or very severe ME/CFS - and I hope, wholeheartedly, I never do - but as a 'moderate' person, I felt like my identity was being sapped from me. I wake up every day afraid that it will be a bad day for my body, a day that signals an incoming loss of capacity. There is nothing I can do to prevent that, except look after my body as best I can - eat well, drink lots of water, drink electrolytes, take my meds, and on and on. My body is a project that I must not fail.

So when the nurse expressed her surprise at my angry red appendix scar, I felt the urge to tell her, you have no idea how much has changed. Despite having literally dozens of photographs of my naked body on your computer, you know so little about it. I don't even understand my body, myself. I want to protect it, and yet I fear it too. There's 'catastrophic failure' brewing within me, and every day I hope that I can somehow hold that failure back, that it will allow me this continued reprieve. It's a state of limbo that I could not have imagined one short year ago.

I feel honestly that I might not have survived this past year without Josh (who had to become my unpaid carer), without the phone calls and parcels from my parents, without all the friends who cooked meals and reassured me and sat with me when I could not leave bed. I love you all. I am grateful every day for what I have.