Tuesday, September 26, 2017

Kirsten's Tips and Tricks #RABlogWeek

colorful tiled background with white text: "Kirsten's Tips and Tricks" - black text on a white rectangle: "#RABlogWeek" - white line - white text: "Not Standing Still's Disease"

It's RA Blog Week! Today's prompt: Tips and tricks – What are the ways you have learned to work around the physical difficulties and limitations of your autoimmune condition?

These are tips and tricks that I use to get through life with a laundry list of diagnoses. I think we're up to 16 now? Oy. That said, they may not fit for every person, every situation, or every location. You should always check in with your provider(s) before making any big changes.

First and foremost, it's important to establish care with providers who listen to you, learn about your illness(es), and do some of your own research. You can learn more about my health care mistakes here.

I've gotten to test many helper items through the Chronic Illness Bloggers network:

From a practical standpoint, it's important to be real with yourself about what you are or aren't capable of at the moment. As I write this, I want to be cleaning and doing laundry or dishes - but I'm flaring and I know this will cause more pain right now. I can pick one of those things, maybe, but certainly not all of them. That's hard to admit, even to myself, but important to recognize. If I pushed myself too hard, I would be paying for it for days.

Find small things you can do to make your spaces, hobbies, and tasks more accessible. Look into getting a supportive floor mat for cooking and consider getting a stool if you make a lot of pasta like I do. Consider getting a shower chair and/or one of those shower heads that can also become a handle. It really helps on those days when showers get difficult.

Meditation using the Buddhify app has been incredibly helpful. They have tracks specific to stress, illness, and chronic pain. It's a great way to remind ourselves that our pain isn't always as big as the story we tell about it - including concerns about if/when it will end, etc - makes it feel.

I've also learned, after years of doing the opposite, that I absolutely must allow myself to feel feelings. If I don't, it comes back to haunt me physically. My body does not cope well with stress at all. I do this in two ways. First, I allow myself to be a grumpy butt. This means I might subtweet on social media or respond more upset to something than I might've before. And that's okay.

Tea and Empathy cards - unheard, frustrated, hurt, discouraged, relief, sh*tty, validated, resilient, vulnerable

Secondly, I really love using my pal Kate McCombs' Tea and Empathy cards to map out my feels. Sometimes T and I use them together to talk about how we're feeling. They can be used with several people or even by yourself. The layout above is a collection of my feelings about how my physical health was as of Saturday night. For example, I was relieved about starting pelvic floor and spine (and neck!) PT. However, I was also feeling pretty shitty because of flaring. These cards are incredibly wonderful - almost as much as Kate!

Speaking of, when I was in Oregon after spending time with Kate in December, I tried marijuana for the first time. I found it to be very effective for my pain and anxiety. I also slept incredibly well! I very much wish that it was legal everywhere, at least medically, because it's a very effective medication. Please make sure that you check on laws in your area before using marijuana.

For my fibromyalgia, I have found engaging in pain play helps. Flogging, specifically, helps to kick my fibro's ass incredibly quickly. Not everyone is interested in or understands kink and/or BDSM, and that's fine. My rheumatologist and I believe that flogging - essentially using a whip with multiple strands on the end - somehow resets my brain's pain processing. It's the only thing that will completely kill my fibromyalgia - very specifically, my allodynia.

Make sure to join me in opposing the Cassidy-Graham plan this week. Click here to learn more.





1 comment:

  1. I can relate to when you push yourself too hard, you pay the price for days. I want to be engaged in an interesting day-to-day life without overdoing it!

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