I was recently looking through pictures on my phone and came across some pictures from a night out with some girlfriends. I had taken pictures from before I left the house of my hair and makeup, and then some pictures with my friends later in the evening. In the pictures before I look awake and ready to go. Only a short time later at the restaurant my eyes tell a completely different story. I doubt anyone else would see it but I can see the difference. In just the short time it took to get from my house to the restaurant I can see how tired I am. I can see that even though the evening out had just started I was already running low on energy and on spoons. That’s because for the chronically ill (a Spoonie) the planning and preparation for a night out starts many hours before the event begins.

Going out used to be so much fun. It was no big deal to work a 12 hour shift and then run home change clothes, freshen up the makeup and go out for drinks and be out until 2 in the morning. And sometimes be back at work at 630. I can’t even imagine doing that now. First, I couldn’t work a 12 hour shift let alone any of the rest of it. It was so much fun because my bestie might call at 8 or 9 pm and say let’s go out and I would find something to wear, do my makeup and run out the door. I never thought about what I had to do in the morning or how tired I was. My only thought would be how cute I looked and if I had enough cash for covers (okay I’m not that vain, but I was 25ish). Sadly, since I got sick that’s all changed. Going out has to be well planned and sadly is no longer a spur of the moment part of my life and now has to be well planned and prepared for. It’s amazing how something that seems like a medical condition so small can be so big and life changing.

Preparation and getting ready for a night out as a spoonie takes a lot of pre-planning and thinking. It’s not quick and easy like it used to be. When I have plans to go out for dinner or for a movie I start planing how I need to rearrange my day a couple days or even a week before. I start thinking about when I can get a nap in during that afternoon. I also have to think earlier in that week about when I should shower so I don’t use all my spoons for the day. I plan my shower to wash my hair a day or so in advance knowing that showering the day of will be so exhausting and I will risk using to many spoons. By moving that activity to the day before I save some spoons so I will have the energy needed for my time out. So for me and other chronically ill, going out for dinner or to a movie sadly is no longer a simple night out for most. It takes a lot of thinking and pre-planning. To those who are healthy this may sound absurd but sadly, it’s true.

Most healthy people and those chronically ill who aren’t in a flare probably don’t have to plan ahead and think about how they are going to get ready. They most likely don’t have to each move and each step of the getting ready process. Unfortunately I do. I have to plan each and every step of the getting ready process. I have to make sure that i am able to get ready and still have enough spoons left after getting ready to be able to enjoy the night.

Another thing I try to do is picking out my clothes beforehand. As this can be very tiring, especially if I have to try on clothing. People who are healthy wouldn’t think about this but when you are chronically ill, everything takes energy you probably don’t have to begin with. The process of putting on several different outfits to find the right one can more spoons spoons than I have available to give. And may potentially take spoons that I will need for my night out. So this needs to be done in advance so I can conserve all the energy possible.

Getting ready….. That is tiring in and of itself. And honestly makes me tired just thinking about it! I have tried several ways to get ready over the years to find the way that works best for me. Through trial and error what I have found that is best for me is to start getting ready way in advance. Several hours, in fact, before I need to leave. If I need to leave by 7pm, I will usually start getting ready by 5, or even earlier if I am really tired or in pain. That way I can have plenty of time to get ready and to include some rest periods. My arms get so tired being in the air while doing my makeup. I realize that sounds crazy, but it’s true. It never used to be a problem but now my arms become very fatigued and start to hurt after a very short time when doing my makeup. So I will do part of my makeup, and then take a break, do a little more and take another break. I will continue this pattern until I complete my whole face. Depending on how I am feeling this process may only require one break. If I am in a flare or feeling poorly it make require multiple breaks to get the job done. I also always want the make sure I give myself a good chunk of time to rest once I’m done getting ready before I need to leave. I’ve learned that I will have more energy and have a better time if I get even 10 minuets to rest before I have to walk out the door.

The process of getting ready from start to finish including shower, blow-drying my hair, styling my hair, Makeup and getting dressed that once took an hour tops. Now is a multi-step process that usually takes several hours over a two day span. Being chronically ill has changed the how I do a many things in life including how I get ready. I’ll be honest, it is not as bad as it sounds here every time I get ready. But then again some times it’s worse. I just never know how it’s going to be until I am in the middle of it. That’s something I think we all take for granted. We never think about the things we do so easily and quickly until something impedes is from doing them. I guess what I want you all to take away from this is, to not take the small things for granted. We all need to appreciate our bodies for the amazing things they can do. We all need to remember that no one knows when things may change and we may not be able to do those small things for ourself anymore.

With Love,

Amber