Vickie Wilkerson, as told to Kara Mayer Robinson
I’ve had psoriatic disease for 17 years.
For me, fatigue can be even worse than the pain. As crazy as it sounds, those of us with joint inflammation get used to being in pain almost daily. But there’s no getting used to the fatigue that riddles your whole body.
I sometimes think of my daily tasks, like getting out of bed and showering, in terms of spoons. Every task uses up a spoon of energy. As my day goes on, I start running low on spoons.
On an average day, I start out with about 10 spoons. I use one of those spoons just to get out of bed. It takes me about an hour just to be able to move. Showering uses up another spoon. Dressing takes up another one. So almost half my spoons are already gone and the morning isn’t even over.
The rest of my day is a juggling act. My spoons start dwindling, so I do only the things that are most important. Even loading a dishwasher can take a spoon. I’m lucky that I work from home, but work generally uses up another three spoons.
If I’m lucky enough to get a nap, it doesn't usually add spoons, but it does dim some of my fatigue.
If you have children who depend on your care, that may take some spoons. My kids are grownups, so I don’t use spoons for that. But if you have to care for children and you have fatigue, five spoons can be gone quickly.
With everything I try to do in a day, I’m usually left with zero spoons. On other days, if I feel worse or I’m sick with a stomach bug, having zero spoons left feels more like -5 spoons. That’s because it spills over into the next day. Instead of starting the next day with 10 spoons, I have only five that need to last the whole day.
There are things I can do to save my spoons. That can make a really big difference in how I get through my days.
Always prioritize. Ask yourself what you really need to do. Some things are probably less important than you think. Maybe the dishes can wait until tomorrow.
Time it right. Schedule tasks that use up a lot of spoons for times when you have your highest energy. For me, that’s midday or as soon as I can get going in the morning.
Use shortcuts. Order your groceries through a food store app, if possible. You can save energy and time you’d spend walking around a grocery store. If you have to go into a store, have a list so it’s easy to go in, get only those items, then get out.
Listen to your body. Don’t push when your body is telling you it’s had enough. If you do, it’ll hurt you more in the long run. Try to scale back on your daily tasks. Do less than you would normally. Take your body’s messages as a sign that it’s best to rest.
Roll with it. If you run out of spoons, there’s not much you can do about it. It’s OK. Don’t get down on yourself. Remember that what you can’t do today, you can always try to do tomorrow.
Plan for tomorrow. On days when you feel good, try not to overdo it. Without realizing it, you may end up limiting your spoons for the next day. This is challenging for me, but I know it’s important.
Sleep well. I didn’t realize how sleep-deprived I was until I got treatment to help me sleep. If you’re having trouble sleeping, please talk to your doctor about it. Your spoons and your energy level with thank you for it.
Ask for help. Get assistance from friends and family. Ask for a hand with physical tasks like grocery shopping, cleaning, and driving so you can save spoons for other things. You may need emotional support, too. Remember, the people in your life aren’t mind readers. No one will truly know what you need if you don’t ask.
Know you’re not alone. You’re not alone -- ever. Every single one of us who has psoriatic disease has felt a lot of the same things you’re feeling. We’ve dealt with the same exact things at one point or another in our journey. It may feel like you’re by yourself in this, but you’re not.
Joining a support group can help you feel less alone. You can also get ideas for how to save spoons from other people who are going through the same thing. You can find online support groups at the National Psoriasis Foundation (https://www.psoriasis.org/
Vickie Wilkerson, 51, has been an advocate for the National Psoriasis Foundation for 10 years. She lives in Shreveport, LA.