Ketones are back. and today everything is hard. Today I feel like someone who is injured, or maybe very drunk, and trying to walk. Walking should be easy, natural, but that person is so out of it that just to put one foot in front of the other and keep going is taking every last ounce of concentration, effort and energy they can muster.
Ketones are a by-product of metabolism gone wrong. They come with starvation, and with type 1 diabetes that is approaching crisis. They turn your blood into an acidic poison that attacks your organs. Ketones will put you into a coma, cause your heart and kidneys to fail.
I start the morning so tired that I just can’t see how I’m going to get through the day. I try to remember the passion I usually feel for this work. But I feel blank and bleak and I fight to keep my eyes open and my days in the lab now are just about getting through until I can get
home to rest. I find myself hiding in the tissue culture hood where I divide routine tasks into mental checklists and have to bend all of my depleted energy to not making mistakes. Today it was “Ok. Take the pipette out of the drawer. Spray it with ethanol. Bring it into the hood. Spray my gloves with ethanol. Take the wrapper off the pipette.” These are things I would do in a second without any thought at all if I were functioning as I usually do. It really is like being so close to collapse that the simple effort of keeping going, of putting one foot in front of the other, takes every last resource of energy and willpower you can muster.
This isn’t tiredness. This is exhaustion in the true sense of the word. All my resources are exhausted; I have nothing left. This is the fatigue that comes sometimes with a long-term illness. It’s so profound I genuinely can not function. Traditional “props” like sugar and caffeine would boost my energy levels, but would tip the glucose and trace ketones in my blood into the danger zone.
I thought I was managing my diabetes (type 1) well because I wasn’t letting it bother me. I was chasing academic papers in prestigious journals, putting on a play and putting out a magazine, running from one thing to another and thinking what a fantastic life I’d built for myself. The intensity of the PhD built up and I started to feel worn out. I put it down to hard work, but the next thing I knew I was waking up in intensive care, for the second time in a few months, in intensive care. I couldn’t see my arms for all the lines and leads going into them and there was a grim consultant standing over me “Do you know you were at death’s door?”
It’s hard to articulate how challenging it is to write and speak certain truths. I need people to know how bad I was and to understand the fear I live with now but when I try to write that I nearly died, or that I could have suffered permanent brain damage, my hand starts to shake on the keyboard and my heart picks up a frantic pace that is frightening in itself. I want to run away. I want my mum. I want to cry my eyes out. I want a book or film to take my mind away, far away from the truth of that thought. I want to hold down the delete key until every trace of those words are off the page and wish there was a delete key that would get them out of my memory.
This is the fear I live with now and my whole life has become about managing diabetes that doesn’t want to be managed. Diabetes itself brings fatigue, and the full-time effort of managing it when it is at crisis point makes that worse. This week is black. I wake up almost paralysed with exhaustion and I know that anyone who could see me first thing in the morning would know instantly how wrong things are. But no one does. I wake up sometimes three hours before a healthy person would need to because it can take that long to get moving. Then, if after this I am in the lab ten minutes late I am chastised for “timekeeping” or have to put up with unfunny wisecracks on “oh, is the nightlife killing you again?”
Fatigue is difficult because unless somebody has experienced it themselves, they cannot understand or empathise. This is not even in the same league as tiredness. This is not about “getting yourself out of bed instead of phaffing about in the mornings.” This is draining and debilitating and is part of an illness that allowances have to be made for. One of the reasons I chose academic research as a career is that the independent nature of research and flexible hours that are standard in a lab make it much easier to manage your health. However, the lab I’m based in decided to structure itself differently, so I no longer have the flexibility I need to keep my health under control. I’m expected to work from home, and do lots of it, when I’m on certified sick leave. But part of the problem is with me. When I met my supervisor on day 1, I should have known the supports and flexibility I’d need and demanded them.
I’ve been so busy proving to myself that illness doesn’t have to stop you that I’ve almost killed myself, twice. I let work slide today while I got my blood clear of ketones and my glucose levels down again. Work is one of many things that will have to change from now on. Because when you find yourself hitting the same brick wall over and over, maybe it’s time to slow down and change your route. If you can’t smash through the wall, you can always climb over or walk around it. It’ll take longer, but you’ll get to the other side in much better shape.