When You're Chronically Ill, There's Never Enough Time

When you’re chronically ill, there’s never enough time. You never have time to improve your health and keep up with your life, it feels impossible and overwhelming.

In April, I received a letter from the National Health Information Service telling me that my appointment scheduled on April 24 had been changed to May 14. I had been waiting for the appointment for over two months, since I broke down because of my hair loss. Now I had to wait three more weeks. It ended up being three whole months of waiting, three months of time. Why do doctors not respect our times and our struggles? Why are so many British people chronically voting against their best interests, then blaming the immigrant next door? Immigration isn’t the issue, the issue is time. Doctors don’t have enough of it, nurses don’t have enough of it and patients don’t have enough of it.

Due to my hair loss, I have to make the transition from methotrexate to something else. I can’t stand the look of my thin hair and I can’t stand the sore scalp. But in order to do this, I need to see a doctor. Until then, I can only wait…while not taking my remaining methotrexate for some kind of relief. I must continue to wait and waste more time.

I am tired. I am in pain. I don’t have time to wait. My PhD isn’t going to wait for me. My friends and family aren’t going to wait. My house isn’t going to wait. Every day I wake up and try and plan what I’m going to do for that day. My whole life is meticulously planned, as it must be when you’re chronically ill. I make all these lists of what I need to get done today:  this week, this month and then I wake up in pain. I can’t get up. I have no energy to move. The tank is empty.

Explaining this tiredness to people is difficult. They say things like “just push through,” so I’ll use an example most people will understand — cars. When someone without chronic fatigue is tired, it’s equivalent to the petrol light on your car coming on. You should put petrol in, but you’re still going to make it to your destination and you can still push through. When a person with chronic fatigue says they’re tired, the car is out of fuel and it has stopped. The sludge from the petrol tank has been pulled through and the car cannot run anymore. There’s no gas left. The truth is we constantly run with the petrol light on, topping up a “fiver” or a “tenner” here and there, but never enough. There’s never enough time to fill the tank up.

When I say I’m tired people always tell me to rest, but I can’t explain that there isn’t time. In order to fill my tank I need two weeks where I have nothing to do. No cooking, not cleaning, no uni, no unpacking, just TV. I recently moved houses (again, FML) and right now my tank is dangerously close to empty. It’s showing I have one mile left, but my destination is five miles away. I should stop at the petrol station, but there’s no time. There’s never any time.

When you’re chronically ill, time is fleeting. It’s usually irrelevant. You may wonder why I am always late. Some people tell me it’s a choice to leave late, but it’s really not. I never know how I’m going to feel until I wake up. Was my sleep restful? Did I toss and turn? Did I have nightmares? Did I contract a cold and my immune system is flaring? Am I in pain? These questions can only be answered once I open my eyes, and by then it’s too late. If the answer to any of these questions is “yes,” it will take me longer to get ready. Why not get up earlier I hear you say? Because I have to get the balance. If I wake up earlier, the additional time is added into how long it’s going to take me to get ready because I will be more tired. No matter the options (and believe me I’ve tried them all), there’s rarely enough time.

Right now, I just need to pause time for about two weeks while I get myself together. I need there to be more hours in a day. I need to rest.

I need more time.