A note before I begin:
Thank you so much to every single person who has helped me to work through this flare. You know who you are. Thank you for calling, texting, and having patience with me while I was very, very stubborn about taking your help. It is impossible to create a list of suggestions that will apply to everyone who is struggling with chronic illness. I just hope that my words can be helpful to somebody who is reading them. Also, these are in no particular order, and I didn't come up with most of them myself.
1. Let yourself wallow (but not forever).
It's important to grieve the temporary (or permanent) loss of your health. Noone ever teaches us that we can grieve for things other than the dead, and the grief that you may be feeling in this case is valid and natural and complicated just like all grief is. It's okay to be sad and eat ice cream (or rugelach in my case) in bed and feel sorry for yourself. Some days are just going to be hard, and at the end of the day, you are going to have to just take the loss and crawl into bed with the dignity and health you've got.
2. Be gentle with yourself.
This is hard, and I am not good at it. This being said, when the world seems to be against us, it is our time to help ourselves. The more situational factors or outside issues that we are experience, the more physical symptoms that we are dealing with, the more we MUST try to be kind to ourselves. This means not pushing ourselves beyond our limits or doing things that make our lives harder just because we want to be seem in a certain way. Use a mobility aid if it will make your life easier. Don't torture yourself over missing a class because your whole body is hurting. Don't make your life harder than it has to be.
3. Try to be grateful for the people who have stayed in your life through the flare instead of focusing on those who haven't.
Going through a flare or a crisis situation of any kind can show you who your true allies are. Some people will be with you at the beginning (at the acute stage), but a few days or weeks later they are nowhere to be found. Some people will come in and out throughout the flare. Some will drop off the face of the earth the first time you talk about a single symptom. But some will be with you every step of the way (sometimes literally when the elevator breaks and you have to walk up 3.5 flights of stairs). And those are the important ones who we must be grateful for. Those are the people who you'll remember in years when you look back at this difficult times. Even though going through a flare can drive many of the people who were previously close to you away, there is a big difference between having one or two people by your side and being alone. You are never completely alone, no matter how much it feels like you are. Try your hardest (and I know how hard it is) to focus on your gratitude for those who have stayed as opposed to focusing on your disappointment and frustration over those who haven't.
4. Do your best to do one thing that you love every day.
Justifying doing something that seems "stupid" or "silly" is difficult when you are at the point at which normal life is already incredibly difficult. But when our bodies or minds are not cooperating, we have to also remember to take care of our souls because every part of ourselves is connected. This can be getting your favorite drink at the coffee shop on your way to work or school, listening to a favorite podcast, or coloring in a coloring book. I, myself, have found listening to music from when I was in middle school to be very comforting to get my mind off of how my body is feeling even if I can't get up and dance to it like I used to.
5. Check in with yourself.
I can be in a ton of pain and not notice. I can be starving and not notice. Because I am used to feeling pain most of the time, I tend to ignore it and just push through the day like everything is normal. This doesn't work during a flare because you end up stuck somewhere because you didn't check in with yourself to determine how much energy you had left before you left. I am told that this is a common experience of others who experience chronic illness and chronic pain as well. Checking in with yourself can just involve taking a deep breath and doing a quick body scan to figure out your energy and pain levels. I find it helpful to do this at the beginning and end of each day. Knowing how you are feeling also will help you to determine what you need whether that be medicine, a cup of coffee or a nap.
6. Make a list.
Make a list of either everything that needs to be done or literally just everything that's in your mind. Somebody suggested this to me at the beginning of my most recent flare, and I hadn't thought about it before. Often the reason that things are overwhelming is because they are all bouncing around in your head with no way to get out, and if you have brain fog like I do, you'll remember one thing that needs to be done, promptly forget it, and then remember another thing that needs to be done and go through exactly the same process with every thing that's bothering you. Writing everything down, whether in a note on your phone or just on a piece of paper, can help you to get your thoughts in order and recognize what you can control and what is just happening. It clears your mind so that you can focus on eating or sleeping or bathing, things that are absolutely necessary to your survival.
7. Take the help that's being offered if it will be helpful.
This is another one that I happen to be terrible at. For some reason, even though it would definitely make it easier for me to walk, I refuse to let anyone carry my backpack. I don't know why I do this. It's just stupid, so do as I say, not as I do. Some help will not be helpful. The person means well, but they don't know how to help you, and that's okay. But if the help will be helpful to you, please take it. If it will help you to talk to someone, please pick up the phone. If it will help you to have someone come over to help do your laundry, ask them. Don't let your pride get in the way of you getting better. Being vulnerable is the only way that we can form strong relationships with one another at the end of the day. Yes, sometimes if you are vulnerable, you can get hurt, but sometimes, when the right person is sitting across the table from you, vulnerability can truly pay off, and you can get exactly the help that you need.
Thank you for reading, and as usual, I'd love to hear your thoughts or additions.
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