While symptoms vary greatly from one lupus patient to the other, fatigue is one of the most common, occurring in up to 80% of cases according to the Lupus Foundation of America.
Oddly enough, it’s one of the symptoms which people have a hard time understanding, leading to comments such as “You’re not the only one who gets tired” or “But you’re being so lazy…”.
So how exactly does fatigue affect me?
- Even when I’m in a pretty good shape, my energy levels are lower than what they used to be. I can still do the things I used to do 1 or 2 years ago, but at a slower pace, over a longer period of time since I get tired more easily and quickly.
- When I’m in a not-so-great shape, I usually have trouble completing certain tasks because I am unable to stay focused and I feel drained after a few hours of activity.
- On a bad day, I open my eyes in the morning and know that I’m not going to make it far today. It’s like being so tired that I’m heavy and that getting enough sleep is the only thing which could remove that weight. Yet, regardless of how many hours of sleep I get, I don’t really feel rested.
- Besides, exhaustion can cause a flare up and one of the symptoms of a flare is feeling tired. See the vicious circle?
And how does fatigue affect other lupus patients?
This of course, varies from one person to the next, but The Lupus Foundation of America has a nice article in which a few people talk about how they experience fatigue: http://www.lupus.org/resources/15-questions-fatigue-and-lupus
Fatigue is probably the symptom which is bringing about the most changes in my daily routine. So far, there are a few rules I’ve set for myself:
- A regular sleep pattern – a time to go to bed and a time to get up, regardless of my plans for the day.
- A minimum of nine hours of sleep per day. No compromise.
- A bedtime routine (such as switching off screens or drinking green tea at a specific time).
- A minimum of one ‘rest day’ per week– I make it a point to keep one day of the week with a minimum activities or obligations, devoted entirely to rest.
- Getting comfortable with sleeping in the bus or in the car. A travel pillow is always handy!
- Avoiding to go out on Sunday evenings, or during the work week.
- Limiting activities on Monday afternoon, since the first day of the work week tends to leave me quite drained out.
- Keeping lighter tasks for that period of the day during which my energy levels are at their lowest (this happens around 13h-16h for me).
- Planning the week as if I was playing Tetris- I try to fit blocks of ‘rest’ between blocks of ‘activities’. For instance, if I have something planned for Saturday morning and Saturday night – I keep the day free so that I can have a long nap. If I’m staying up all through Friday night – then no going out on Saturday, I’ll use that time to catch up on some sleep.
- Learning to prioritise: I cannot afford to attend all events and do all the things I wish to, especially if they occur consecutively. Some questions which help me chose are: Is it something recurring or a once in a while opportunity? Can I postpone that for next week? How worthwhile is it as compared to the other?
- Saying no, unapologetically: Whether I know in advance that something doesn’t fit in my ‘Tetris planning’, or if I had to cancel at the last moment because I woke up that day and felt that my body was saying “no”, I still tend to feel guilty to decline/cancel something “because I need to sleep”. I sometimes have the impression that I’m letting people or that I’m missing out because of a… weakness.
I’m still learning that putting myself first does not involve a lack of consideration for others, or that taking the time to reboot is not a waste.
The Spoon Theory
The Spoon Theory was developed by Christine Miserandino, a lupus patient, as she attempted to describe what life with lupus was like and grabbed the first thing available – spoons– to be used as visual cues. (www.butyoudontlooksick.com/the_spoon_theory)
A healthy person has an unlimited amount of spoon, but someone living with a chronic illness starts the day with, let’s say, 12 spoons. Each activity makes use of one or several spoons. Getting dressed for instance, may cost 1 spoon, cooking a meal would use 3 while going to work takes up 5. Not getting enough sleep, forgetting to take your medicine or having a cold for instance, means you have less spoons.
Since your amount of spoons is limited, you have to be careful about how to use them, planning ahead so that you don’t run out of spoons. This theory is now used across several chronic illnesses and patients are often referred to as ‘spoonies’
While I may not use it literally, this theory was a useful tool in learning how to organise my day to effectively balance more demanding tasks and lighter ones. It also serves as a reminder that everything requires some form of attention and energy, but that not all of them are worth it…