In my early twenties I was sick for about three years with a debilitating problem that nobody really understood, and maybe three quarters of the world didn’t believe in. I didn’t look unwell, but I got recurrent infections and was exhausted all the time. I could marshall my forces and look normal for an hour or two here and there, but the effort cost me days of recovery time. In the early stages I spent weeks on the couch, barely able to get up and go to the loo. Then I started to get better, but quickly plateaued in a no-man’s land called Chronic Fatigue Syndrome.
The worst part about CFS was the disbelief. My own parents, and many others, found it impossible to believe in something that they couldn’t see, and that doctors couldn’t agree on. Fatigue is difficult to quantify, so it was much easier for my parents to assume I was doing too much, and just getting a little tired, than to face the devastating impact the condition had on my life.
I eventually recovered from CFS, but I was never quite the same. I couldn’t manage late nights, tired easily, and still got more infections than your average bear. Gradually I built up my fitness and changed my lifestyle, trying to eliminate anything that might be holding me back.
But what lingered more than anything was a severe self-doubt. Deep down I wondered if I was just a hypochondriac, or chronically lazy. Maybe I was nuts? During the darkest times I even wished I had something drastic, like cancer, if only because it was relatively well known and understood, and people might stop doubting me if I could hand them a neatly packaged diagnosis to excuse what I saw as my many failings. I felt awkward and self-conscious every time I left a party early. I felt like I needed excuses to justify who I was and how I behaved.
When what seemed like a promising new friendship collapsed after I left my friend’s party at 9:30pm, with her incredulous and disappointed response echoing in my ears, I could have screamed in frustration. Never mind whether there was actually a connection between the early departure and the end of the friendship. In my head my feeble body was getting between me and my life, and there seemed to be no valid reason for it. I felt like a failure.
Seven years ago, when I began to experience pins and needles in my hands and feet all the time, it seemed like another round of Guess The Diagnosis, and I wasn’t all that keen on playing. Although I was getting what felt like electric shocks in my feet with every step when I first got out of bed, it generally settled during the day, and was more odd than distressing. A normal brain MRI seemed to confirm that there was nothing much going on, and I stopped thinking about it. (In hindsight I should have wondered about that. What are the chances of my brain being normal?)
Then a few months ago parts of my feet started to go numb. I kept thinking I had something stuck to the bottom of my foot, because it felt as though there was some interference, something stopping my left foot from quite hitting the floor. I assumed it had to do with the toe injury I’d inflicted on myself when I ran through a doorway and missed a few years ago, until it moved to the other foot, which had a relatively good relationship with doorways and no injuries that I knew of.
The pins and needles got worse. Exhaustion became my constant companion, far more draining than I can readily account for. Random knives now stick themselves into different parts of my body, and then disappear. Sometimes my feet don’t quite clear the floor when I take a step, and today, just for something different, my fingers became weak and shaky and I started to drop things.
Working part time, kids, and life, are almost more than I can handle. Hot weather seems to make the symptoms much worse. I lose my balance occasionally. I get dizzy easily. A whole list of relatively minor complaints that seem trivial when handled individually become scary when you list them side by side.
Yet scary though it is, I almost want a disturbing diagnosis. I’m more afraid of not having an answer than of having a scary answer. More than anything I am looking for a reason to go easy on myself. To rest when I need to rest, without screaming at myself for being a useless slacker.
Yesterday I was messaging a friend about how frustrated I was feeling with myself. I was at Sorrento, and I felt I should have been making the most of being down there and going for a kayak, or at least a swim, but all I wanted to do was lie on the couch. My friend seemed nonplussed by all this self-aggression. “You’re allowed to do nothing sometimes,” he said. “You need a rest. You’re burning out. You need to go easy on yourself.”
As though I had been given a note to skip school, I immediately relaxed and did nothing for a few hours. But it started me thinking. Why do I need a diagnosis to be kind to myself? Why do I need a medical certificate to give myself permission to rest when I’m tired?
Sometimes, when people find out I have a PhD in Computer Science, they say “oooh! You must be so smart!” and I shrug ruefully and say “More stubborn than anything.” It seems I have turned this stubbornness on myself, and used it to push through and keep working, in sickness and in health, until I literally drop.
My feet still tingle to the point of pain sometimes. They go numb, I lose my balance, and I am so very, painfully tired. I have no diagnosis, although I have a specialist appointment in a few months’ time. But with or without a diagnosis, I’m going to write my own medical certificate:
To whom it may concern,
Linda McIver is suffering from extreme stubbornness. She may occasionally need to be whacked about the head with the frying pan of perspective. Until further notice she has permission to rest when she needs to without feeling the slightest bit guilty, and is under strict medical instructions to be nicer to herself.
Dr Linda McIver, PhD.
I’m still looking for answers, but maybe first I need to work out what the question is.