MY FELLOW FIBRO WARRIORS (and others who experience cognitive fog)
This product is so freaking cool. I got my pack at Papersource, I bet you can find them online. I know we all make lists, but really, how often do we check those lists? Not often enough.
Now your list can go on your wrist!! Hot damn.
We are on the autism spectrum, and also on the multiplicity spectrum, and struggled for a long time with communication and self-expression.
One day we got the idea to make a “Status Necklace”- a necklace with charms made of shrinky dinks, stacked on top of each other like a flip book, showing various things about how we were feeling. Who was there, how overloaded we were, what pronouns we wanted people to use for us at the moment, things like that. When verbal communication was freezing up on us, or when anxiety was preventing us from saying how we felt, flipping a charm on a necklace was often a form of communication that actually WORKED.
A lot of people we met expressed interest in the status necklaces, and we worked on more designs. We’ve heard of other autistic people using changing symbols to communicate - The interaction badges used at Autreat being one example - and wanted to come up with designs that would be easy to use, easy to wear, useful for communication, or just plain fun.
Thus, Spacerobot Studio was born.
We’re also using it to make jewelry designs for things that seem sorely lacking in pride jewelry- Neurodiversity, Autism, Multiplicity, and Asexuality.
Although these are made with folks on the autism spectrum in mind, I think they’d be great for folks dealing with chronic illness, too. And, if you’ve got both going on in your life… then it’s just mega-awesome!
By the way, if anyone’s curious about plurality (the blanket term for ‘multiplicity’ mentioned in the creators’ shop info), this blog looks like it would be a good starting resource.
My name is Jessica and I have 3 scary diseases that make life a little hard.
Melanoma (very aggressive skin cancer) was the first one to crop up. It runs in the family. I successfully battled it for 6 months. I still have to be careful, but in all honesty it wasn’t so bad! I have been completely clear for over 3 years now!
Stage 3 Endometriosis. I have failed all treatments. It isn’t cancer, but honestly hurts way more than Melanoma ever did. It has spread to my diaphragm and is creeping up my spine. This is something that doesn’t usually happen with this disease so doctors don’t know what to do with me. There is no cure for this.
Narcolepsy. Yeah laugh all you want. It’s a little funny when I sleep mid-sentence or when i’m eating. But it’s also very scary. I have fallen asleep in the bathtub face down. Crushed my ears and cheeks on marble. Suffocated. It’s currently untreated because of all the hype trying to get my Endo under control.
When I had the head scarf and wheelchair people stared at me and I wanted to hide. Now that I look normal I wish someone would see that i’m hurt and come help. Whether your disease is visible or invisible things are hard.. Mental or physical you’re going to struggle. I think i’ve learned that the key is in the adjustment. It’s ok to mourn what you miss or will never have because of your condition. Feeling uncomfortable with what’s happening to you is a good thing. Be cranky about it, throw a fit, get angry, bitter, sad. Because you have a lot on you’re plate and not a fuck left to spare.
Night time is a particularly hard time for people with chronic illness. We’re in pain from the day, stuck awake from the insomnia our illnesses bring, and usually alone. You’re just laying in bed, staring at the ceiling wishing for any sort of relief or comfort or even a distraction. Feeling so desperate and sad and lonely. Just because your body decided to turn against you.
(And anyone with any illness that has to stay home some or all of the time.)
I feel there is a constant feeling and stigma of “laziness” for people that stay at home, ill or not, and don’t “do anything”. This misconception is eating at me today, so I have some pointers for those of you that have to stay at home, or know someone that does.
It is not a vacation, and it is not a day off. It’s common to think people stay home so they don’t have to stress about work or school or anything, but someone with a chronic mental or physical illness may not be home for that reason. I may not have work or school to worry about while at home, but I assure you it is not stress free and I’m not partying.
All productivity is productivity. Some days, cleaning an entire house, running all the errands, showering, getting ready, and reading your favorite book series is possible. Other days, only a shower is possible. There are even days where none of that is possible, if you are expected to have the energy to go to the bathroom or roll over in bed. It’s completely okay to applaud yourself or others regardless of the above scenario. If you are not proud of yourself or someone else for their accomplishment for that day, don’t say anything. “If you don’t have anything nice to say, don’t say anything at all.”
Being awake isn’t the same as being able. If someone is at home, awake, and on an electronic device or watching a movie… this does not mean they are well. It is stressful and discouraging when you treat someone as though they should get up and do things simply because they’re awake. There is such thing as crippling illnesses that you can not and will not physically see. I’m not laying or sitting here because I’m bored or have nothing to do, I’m doing it because I simply can’t do anything else.
Your spoken disapproval will not change anything, keep it to yourself. I understand how frustrating it is when it seems like people just don’t want to move, and you need them to… but shush. It is NEVER EVERhelpful to hear nothing but degrading statements that make someone feel bad about themselves because of something they have no control over. I’m not ignoring you, I’m not choosing to disobey your orders, I simply cannot get up or accomplish what you’re asking of me. I know it bothers you that I do “nothing” and I promise it bugs me too, but all anyone needs to hear is that the fact they are silently battling something inside is good enough, no matter what physical proof they can show you for the day.
You do not have to understand, approve, or agree… but please keep in mind that the way others handle their personal battles within is not up to you. It’s okay to be frustrated, but it is not okay to be mean or hurtful.
I am on your side, and I understand. I’m cheering for you, all of you. <3
[Batteries in various stages of power against yellow background. Title text: “Effects of Social Events on Spoonies.” Battery 1 is ¾ full with caption: “Getting ready.” Battery 2 is ½ full with caption: “1-3 hours at event.” Battery 3 is ¼ full with caption: “1-3 hours at event.” Battery 4 is empty with caption: “Travel home.”]
One of the worst things about suffering from a chronic illness to me is having to cancel plans with loved ones. Again. With like, an hour’s notice. It makes me feel absolutely horrible and so guilty and I absolutely hate it. People that want to claim that you “hide behind your illness” to get out of things you don’t want to do (😑) tend to not realize that your illness also forces you to get out of things you DO want to do. Things that you love and that would give you energy if only you had the energy to do them. (How’s that for cruel irony?)
Chronic illness isn’t some quaint little excuse that you can use to get out of a boring meeting or a stressful trip to the grocery store on a busy Friday afternoon; it affects and runs though everything in a negative manner. EVERYTHING. No aspect of your life is unaffected. It touches family relationships, romantic relationships, work, doctor appointments, personal hygiene, mental health, sex life, confidence, identity….everything.
Their are many heavy hearts in the spoonie community today. This morning word spread threw the spoonie community about Christina. The thing about being a spoonie is even if you dont know that spoonie, you know how they felt. Usually we lose our spoonie family from their nasty diseases, Christina on the other hand was in the state most spoonies i know are at. She couldnt handle the pain anymore and killed herself. Its an understatement that we know how she feels. You get to a point where no one wants to hear about your pain, its so overwhelming and debilitaing and youre handling it on your own, alone. The mind is a dark place and pain will kill you mentally and sometimes push you to kill yourself. Rest sweet angel. You are no longer in pain, youre spoonie family lifts your soul up today. 😢 #spoonie #spoonies #chronicillness #chronicpain #chronicillnessadvocate
Friendly Reminder: If you’re currently on IV antibiotics, or strong oral antibiotics, please remember to drink lots and lots of water! Your liver is doing a lot of work filtering out your blood and being dehydrated can give you what I can only describe as an “antibiotics hangover”. Hope you are all doing well!