Here are some things that have been helpful for me in coping with all the pain, etc. that weighs me down on this journey:

  1. Knowing my body – I promise you, I am more intimately connected with my body and its functions, needs, limits, and strengths than almost everyone I’ve ever known. I’ve gotten to this point by studying anatomy and medical information but also by meditation, mindfulness, yoga, and self massage. Learning how to listen to and understand your body as it communicates to you is essential for any kind of healing or self care. It’s also how to attune your own personal severity spectrum: for example, if my back starts the day off at a higher frequency of pops than normal, I know that to be a warning of heightened instability and will keep my movements minimal that day as to avoid injury. I read blogs from others with conditions like mine, as well, to get a better understanding of how to gauge my Worry Meter and to feel supported in the fight. Commiseration has more value that most people realize.
  2. Meditation and mindfulnessMindfulness, as a form of meditation, is about being fully present in the moment, in a feeling, in a thought process, in an activity. It’s about being fully aware of what is happening without any concurrent thoughts or activities. For example, when a new symptom arises, I spend some time focusing all my energy and awareness on that part of my body to try and determine exactly what’s going on. I’ll tune everything out and go within, connecting intuitively to the local anatomy so that I can better hear what it’s trying to tell me. This often happens during a bath, which I’ll get to soon.
  3. Furbabies – Anyone with chronic illness who has pets can attest to the healing powers of a furry snuggle or the sweetness of an inquisitive and worried critter running over to see if you’re okay when you cry out in pain. Here are our three:Kasey came first – pit mix we got from a rescue two years ago. (Click for captions)

    And a little over a year ago, we adopted Bruno and Boots from an Amish family nearby. Bruno “Squishy Fluffers” has the most perfect big, squishy, fluffy kitty belly, and sometimes he even lets me bury my face in it!

  4. Cannabis – it’s not legal in our state, so if I need it, I risk arrest and imprisonment, but it’s the only thing my body will tolerate that actually helps with the pain. I can’t tolerate any of the prescription pain medications I’ve tried – I’m actually allergic to opioids, muscle relaxers, and hydrocodone – or they simply don’t do anything. I’ve heard the same from several others with EDS and/or Chiari Malformation, and there’s even scientific evidence to support the use of cannabis for EDS pain management. More here and there and probably quite a few other places.
  5. Heat – If I get cold, the pain shoots up fast and hard, and the only thing that helps is getting warm. Also, at least twice a week, I take a very long, very hot bath with magnesium flakes, every third bath or so, adding vitamin E oil to massage into my skin. I’ll soak, float, and relax as much as I can (this is meditation and re-centering time), but I also use that time to massage whatever needs it. Whether it’s just working out soreness from muscles or trying to work a joint back into place, it really all works best with heat and water. If it’s a good day for joints, energy, and skin sensors (I have distorted sensations that often make touching my legs even lightly feel like I’ve been hit with a very hot sander), I’ll soak until the water cools, replace some of it to heat everything back up to sauna conditions, and shave with coconut oil. *I’ll never shave without it again* If a bath isn’t doable, a heating pad will suffice.
  6. Laughter – A day without a laugh is a truly horrible day. Obviously, any fun social event is going to be a stress reliever, but I can’t really be very social with my body. So, I make humor a priority in everyday life, making light of things whenever an opportunity presents itself.
  7. Hubby – Sure, he’s a little unavailable when it comes to emotional support because he’s just not wired that way (probable Autism, Combat Medic), but he does so much. He works full-time and is in the military to keep bills paid and keep the good insurance; he drives almost all the time; he’ll get groceries on his own when I can’t go with him (we always go together because it’s unsafe for me to do alone); he helps cook and clean; he’s constantly doing things for me when he’s home so I don’t have to get up or bend over or lean or whatever; he lifts me up when I can’t stand on my own, guides me to safety when an episode hits and watches over me, and holds me when I’m crying in pain; he makes every effort to be understanding and compassionate when it comes to my limitations, and I am so grateful for that, knowing how much harder it must be for anyone who’s single and dealing with problems like mine.
  8. Time with friends – I can’t get out much, but every time I do, no matter how physically painful it might be, it’s still helpful in battling the depression this stuff creates.
  9. Supplements – Right now, I take Baby Aspirin, Methylcobalamin, Methylfolate, D3, Magnesium Malate, Flax Seed Oil, Collagen (this is new, dunno if it’s helping or not yet), and two different kinds of Digestive Enzymes. I know there are a couple others I might benefit from, but I’m kinda at my max pill tolerance right now and not wanting to add anything else.
  10. Massage – We don’t have the budget for regular massage so I’ve learned, through connecting with my body and researching online, how to work everything back into place. Usually, I’ll work pressure points to get muscles to relax and release so that whatever they’re pulling on just slides itself back. Sometimes, I have to work the actual joint directly. *If you’re not fully in tune with your body, and if you’re not properly educated, YOU CAN HURT YOURSELF DOING THIS. Be careful!* I have actually injured myself not paying close enough attention to recognize warning signs. So, rub what hurts, definitely. Make sure you know what’s what, though, before trying to manipulate any joints or pressure points. Here’s a starting point for learning about Myofascial Trigger Points.

There are more things that help me feel better, but these, I guess, are the top 10. Of course, I’m a stress eater, so there are a number of foods that are quite comforting for my mouth and my emotions that I could list here. With my digestive issues, though, I can’t call any food thing helpful except ginger ale and green olives – the soda settles an upset tummy (to an extent), and the salt of the olives keeps my blood pumping a little better (I’m on high sodium orders, and I know when I’m craving olives that I’ve not been getting enough). Right now, though, it’s time to heat up the Loaded Baked Potato Soup I made from scratch and without injury the other day. Mmm…

What helps you? I’m always looking for ideas. Share in the comments or maybe write up your own post with a link here so I know to check it out. 🙂


#fuckinglegalizeitalreadyyouignorantsacksofshit  #fuckthemidwest #massexodus