WHAT TO DO WHEN YOU CAN'T

      This is for all of us less-abled folks who may be reading my blog. It will not be depressing, I promise. I just want to talk about those of us inhabiting the Dysautonomia community. Remember that Dys--(meaning "not working") and "autonomia", (meaning your autonomic nervous system."), is a term which includes several Autoimmune Diseases. What is it like for us when we cannot find the Spoons (measures of energy) to "do" "normal life"?

    1/ Plan to fail. Perhaps I should have said: Perhaps to be less than perfect.  When you are splayed on the couch after a short walk with the dog

 and are wondering how many Spoons you have left (units of energy), go to www.butyoudontlooksick.com and print out the graphic.

 Remember that this is not a scientific discussion of energy, but rather a clever graphic designed by a woman with lupus, Christine Misericando. This shows the 12 spoons you get per day, and how to assign a number to various tasks. Me: cooking supper=3 spoons. Answering email=2 spoons. Making bed and tidying=5 spoons. Walking the dog=2 spoons. Hey, this uses up my 12, and now I can stay on the couch viewing monkey videos from the Savannah Camp in Cambodia and looking at new cookbooks!

    2/ Assign spoons to social events and places with lots of people who talk. If you are like me, you get tired very soon when you are surrounded by talky folks. My Writers' Group, where I am a member, has fabulous, talented women who are not shy about talking. 

Hence and wherefore--after 1 hour+ I must leave to preserve my remaining spoons. Also, please note that when assessing events, you must include the driving time to get there, as that uses up energy too. I find the UCC services nearby to be incandescent, nourishing, and exhausting 'cause there is a lot of talking and emotional output. At Catholic Mass, I do not use so much energy as it is quieter, more ritualistic, and calming. So: 2 spoons for Mass, 5 Spoons for UCC.

    3/ What events MUST you attend? If it is a family reunion, 

which we have at Christmas at my brother's house nearby, I have to go and see my dear ones. Knowing this could use up 5 spoons, I tend to find a niche in a room with one person I can connect with. Remember: listening deeply and paying attention costs a lot of spoons. If it is a birthday party, a dance recital, some sports event with your kid in it, you have to go. Again, put some space between you and a near chair; choose a friend to talk with; and when you are drooping, go lie down on the grass somewhere until the game is done. 

    4/ Plan to be exhausted and support yourself. I have a nifty, roller adjustable kitchen chair with a back which I use to prep dinner when my spoons are low. I can raise it to counter level and happily chop peppers, onions, mushrooms, and more to make Ratatouille. I can even stir the pan and cook on my gas stove sitting in the chair. Next suggestion: order (from damn Amazon of course) some differing glass containers with locking lids. When you make a dinner, make enough for two nights always. Then put the second night dinner into these containers and stick in fridge. That coming day might be one where you have a meeting or some event you cannot avoid. Then, happily, everything is set to go except for pouring yourself a glass of wine--if you drink.

    5/ Figure out which things and people calm and restore you after exhaustion. My younger son, who has "a clown car of diseases" (Autoimmune) finds that he has to just lie in bed before arising and making food safe for his food allergies. Resting on a couch with my feet raised up also helps after a tiring event. I find monkey videos with a cup of tea and our fuzzy dog nearby refreshes me.

 I do no email or phone calls then. Beautiful art on FB also nourishes me and a new site I have found on FB, "View Through Your Window." Many photos from Ukraine, South Africa, USA, Britain, France, and others.

    Clearly you have to be proactive if you have some form of Dysautonomia or another series of conditions which make you less-abled. Let's look at some resources or places where you can learn more and get support:

--Dysautonomia International Massachusetts Group (on FB)

--POTS Awareness and Support Group (on FB)

--The Chargies Group (on FB)

--I also follow "chronicallypersevering" featuring Cienna, a beautiful, young woman who is mostly, not always, wheelchair-bound. Her posts on what it is like to live as a disabled person in an abelist world are quite wonderful. She opened my eyes for sure.

 

    So, you can plan for the bad days when your condition asserts itself diabolically. On the other hand, you can have a good day where you do errands, take a hike, and prep for a not-so-good-day. No question, Dysautonomia is a roller coaster which takes a lot of planning, courage, and determination. Plus meds! Just pay attention to your body's signals please; rest whenever you can; and know that you can manage your condition and live with it.