I mentioned in a previous post that I have Hashimoto’s and Hypothyroidism. I didn’t mention Postural Orthostatic Tachycardia Syndrome (POTS) or Mast Cell Activation Syndrome (MCAS). Dumbing it way down, the POTS makes my blood pressure drop, causing light headedness, nausea, shaking, racing heart, migraines, and possible fainting. I like to think of MCAS as just really severe allergic reactions. I’m currently in a phase of life, or a flare, if you will, with POTS.
I would say my biggest frustration with chronic illness at this time of my life is finding ways to connect with my children. I like to be active and moving, but when I am in a flare, it is not always possible some days. This changes what activities I can manage with my kids. I know I can’t possibly be alone in this frustration, so I wanted to share some ideas with others for these rough, chronic illness phases of life.
1. Coloring
We love to color together. I will give you that even this can be rough on a particularly lightheaded day. I got everyone lap desks, so we can sit or lie down anywhere!
2. Puzzles
This is another quiet activity we enjoy. You can make a dedicated space in your home to keep your puzzle to work on it over days, weeks, or even months, and return to it on those low days. If that’s not doable, they also make lovely puzzle storage options.
3. Video Games
Now this is one I can’t do every chronic illness day. If I am struggling with migraine, light sensitivity, or dizziness. You can imagine how that goes. However, it’s a great option for fatigue. Especially if, which is often the case for me now, as my kids are a bit older, they just want you to sit there and watch and admire their game! For example, I have no idea what is happening on Minecraft or Roblox, but I sit there and ooh and ahh over something they are doing, they feel very connected with me! Very low work with a high pay off for a fatigued lady.
4. Reading
No rules here! Sit and read a book together. Sit and read different books quietly. Listen to an audiobook and inevitably all end up napping!
5. Watch a Movie
We have a list of movies to watch specifically for my days that I am flared! We keep on cozy loungewear and look forward to simply relaxing.
6. Talk and Connect
This seems obvious, but I’m including it. I know how exhausting these days are. It does a number on your confidence and self-esteem as an individual as well. How can I be a good person or a good mother, if I cannot even stand upright today? (POTS’ll do that sometimes.) The most important, deep connection is that your children feel heard and know you are there and interested in your life. Believe it or not, you are enough even on the days that you can only BE.
It’s hard enough dealing with the fatigue of chronic illness all on its own, and I have had it rob me of a lot of the way I hoped my life would look. Where that hurts me, most is in motherhood. I have learned, however, that it’s actually possible to be connecting even more in those dark moments. I hope this helps you to not be ashamed on those days. Put on your coziest sweats, grab the remote, and snuggle those kids. They just need YOU. You are enough.
