Little Things Add Up (avoiding crashes)
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- Опубликовано: 24 авг 2024
- After almost two years of avoiding crashes, I crashed for a month from overdoing it during Thanksgiving. What would I do differently?
1. Search your house for the things that take extra energy. Find ways to save energy in your house. For me it was the wheels on a chair.
2. Take really long breaks (like a week) after major activity or hopefully longer between major activities. This will look different depending on your severity level, but when in doubt take more time than you think you need.
Thank you! I appreciate your thoroughness and thoughtfulness on your channel and website. Phenomenal work! I am a care-partner and health advocate for two people with ME/CFS in Northern California. I am in awe of how much work and personal experience you have devoted to help others. I deeply appreciate all that you have done and I look forward viewing any future content.
Thank you so much for this, lovely! I’m learning a lot from you!! You’re talking to Dr’s videos were amazing, & I can’t wait until my next appointment Lol! You give me hope. I need you to know that! I am currently severe & terrified that I’m never going to get better, but you remind me that it is possible, and some of it is within my control!! X
If you haven't found it- I also have a resource site cfs-me-navigator.com Glad to be helpful!
Great tips. I have a perch chair in my kitchen, wheelchair for when my hubby and I want to go on long walks as I live near countryside. Yes crashing around the festive period is a huge thing and my first Christmas with chronic illness I crashed for 2 weeks. I too used to have noise sensitivity but I'm a bit better now but do have tinnitus. I find long conversations very tiring. It's like our bodies are so sensitive now to life really, but that's OK as we know how to dip in and out of social times, family time etc. I rest 2 days prior to any social engagements and 2 days after, I'm always fatigued and in pain but I try and keep it to a level I can cope with. My baseline varies and I don't know why. X
This might sound like a silly question, but what does rest look like for you? When you say you rest for a week, could you explain what exactly that entails? How many hours a day are you sleeping, and is it all continual, or broken into small segments?
I'm relatively new to CFS - two months into a housebound crash, in the severe category (but closer to moderate. Each day I make two small meals, make my bed, wash a few dishes - but all things that my body is telling me I probably shouldn't be doing.)
What I struggle with is I can rest about two or three times a day, for about 30-45 minutes at a time. I get so antsy, and feel like I'm buried alive just trapped in my body, just with my thoughts. I've always been a bad sleeper, and often only get about five hours a night (not in a row.)
I'm amazed at people who can sleep 8 or 10 or 12 hours in a row. And those with ME/CFS who can sleep all night and then sleep most of the day too. Part of me is envious, because I know that's what my body needs.
Nonetheless, I'd love to hear what rest for a day or a full week looks like for you, in terms of actual specifics, from the beginning of the day to the end.
Much appreciated! Hope this finds you well.
Sleeping is hard, but once I'm asleep I usually need 10-12 hours. I don't (can't) nap unless I'm inches from a crash.
Aggressive resting is staying in bed, limiting screen time, putting on the blackout curtains. If really aggressively resting I do this with only audiobooks, no screens (or check media hours apart for only 5 min at a time). At this point a day or two of aggressive rest will usually stop me from a crash, but then I have to "rest"-rest for a week in a lot of cases.
If I'm resting it's more like doing way less than usual, mostly staying in bed, mostly keeping the curtains drawn, but a little more screen time and getting up for some things other than bathroom/food.
It really depends on where your baseline is at. If you are more mild aggressively resting could be my "resting". If you are very sever you might be totally in the dark, no audiobooks possible. It depends where you are.
Yes, rest is hard (I'm ADHD and never could sit still), but when its hard I imagine myself needing a feeding tube (will happen if you get bad enough through push-crash cycles) and its easier.