Dear Super Awesome Friend,
Loving someone is hard, loving someone with chronic pain and chronic illnesses can add some uncharted territory. This is my attempt to help some friends out who have been struggling with the answer "I don't know" to the amazingly beautiful question of, "what can I do to help?" First, know that while unsatisfying for your drive to be useful, fix the world, and get home in time for dinner, your presence and attention mean more than you might ever realize. Illness is lonely, isolating, and unpredictable. Waking up after a night of pain and other fun NSFW wonders to random memes, emojis, or stories can make a shift from bad day mode to good day mode (ze mind is a powerful thing you know). Obligated to text me every day and respond to everything I text you? Nope, Chuck Testa! While I hate saying no and canceling plans, I would almost always rather be invited (unless it's a chocolate festival in which case all self control will be throw to waste and the gastroparesis gods will reign down their mighty wrath). While each of you can probably call to memory many times where I have no taken care of myself or made bad choices, for the most part I know my limitations all too well.
Here are some FAQ on this topic:
What are some things that are easy for you to do?
- All the time: laugh, watch netflix, talk about what I watch on netflix, watching disney movies, fix things, cards or board games, singing disney songs in rediculous voices
- Most of the time: all of the above, car rides, rolls near water (parks, creeks etc), going to movies, swimming, vidja games
- I HAVE SO MANY SPOONS AND GOT MORE THAN 3 HOURS OF SLEEP: rock climbing, nature, camping, amusement parks, museums, and frisbee
What are some things that you don't like doing?
- Going to loud, busy or bright places or flashing lights
- Meeting multiple new people at once
- Anything that requires long periods of focus (ie watching a pot boil, watching a fast paced subtitles movie)
- Games I can't win at (just kidding...kind of)
- Going out with multiple stops (chair loading and unloading is tiring yo)
When is it best to give you space?
- When I'm being a brat for no reason (fight me...I dare you)
- When I've been in a spoon drought (see above)
You haven't texted me back, did I do something wrong? Do you hate me?
Probably, most of you are terrible people. But actually no, usually it is one of the following:
- I'm low on spoons
- I'm having vision problems
- I read it, swore to the unicorns I responded but actually didn't, and found it three weeks later...
- I can't form coherent sentences in English
- I physically don't have my phone
I feel like a bad friend for not knowing how to help/what to do/what to say....
The fact you feel that way actually means you are a good friend and just not a psychic or a unicorn... we all can't be awesome ya know. But actually this one is a tough one because so far none of the answers I have given people have been reviewed as 5 star customer service. I guess all I can say is that I hear you and I understand and view nothing more or less of you measly humans.
Am I supposed to laugh at your twisted jokes about death and illness or is that in bad taste?
You can laugh if you want.
I'm scared but I don't want you to know or worry about me because apparently there is some precedent for supposedly being able to tolerate scary diseases and pain and suffering of a close friend and I have to hold myself to that standard.... oh or I could accidentally kill you...
It is okay to be scared, I'm scared too. Give yourself time.
I hope this helped someone but if not at least I got a few more memes into play.
Love you fools,
Julie
