30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: I have several. The ones that affect me the most are Chronic Pain Syndrome & Celiac Disease
2. I was diagnosed with it in the year: 2014
3. But I had symptoms since: 2009
4. The biggest adjustment I’ve had to make is: learning to set proper expectations for my advancement and recovery.
5. Most people assume: that I am healthy and/or that I’m just making it up.
6. The hardest part about mornings are: the fact that I often haven’t slept well, so either my chronic exhaustion has kicked in, or if I’ve taken painkillers, I possibly didn’t move during the night, so my muscles and joints are stiff and sore. Plus, I need to make a decision within the first fifteen to twenty minutes I’m awake as to whether or not I can make it through a whole day at work, because my husband drives us both to work, and I can’t ask him to leave work to take me home. That’s a very stressful thing to have to decide every morning.
7. My favorite medical TV show is: I don’t watch medical TV, it stresses me out.
8. A gadget I couldn’t live without is: My tablet. It keeps me sane when I literally can’t get out of bed, and has all my organizational items on it.
9. The hardest part about nights are: worrying about whether or not I’ll be able to get enough sleep to get up tomorrow, which keeps me from going to sleep.
10. Each day I take Between 10-15 pills & vitamins.
11. Regarding alternative treatments I: have been through the wringer and am not looking for more solutions right now. I need to rest a bit.
12. If I had to choose between an invisible illness or visible I would choose: I would stay how I am. This is a weird question.
13. Regarding working and career: I’m trying to get healthy enough to go to work every day, or most days. I think my “career,” which was promising before my illness, has pretty much been ruined.
14. People would be surprised to know: that the majority of the time I am on narcotic painkillers because otherwise I wouldn’t be able to function.
15. The hardest thing to accept about my new reality has been: that I feel like I’m missing my son growing up.
16. Something I never thought I could do with my illness that I did was: I’m not sure yet. I’m still climbing out of the abyss.
17. The commercials about my illness: There are no commercials about my illness.
18. Something I really miss doing since I was diagnosed is: being able to enjoy weekends more.
19. It was really hard to have to give up: the idea that I can have the career I wanted to have.
20. A new hobby I have taken up since my diagnosis is: writing on Tumblr, which was the suggestion of my husband to help me process. It was a really good suggestion.
21. If I could have one day of feeling normal again I would: swim in the ocean all day.
22. My illness has taught me: how strong my son is.
23. Want to know a secret? One thing people say that gets under my skin is: “Not getting out of bed sounds really great.”
24. But I love it when people: support me as best they can, even from afar. Some of my best support has come from other continents.
25. My favorite motto, scripture, quote that gets me through tough times is: “Today I broke my record for most consecutive days lived.”
26. When someone is diagnosed I’d like to tell them: It’s a process. Commit yourself to the process of getting to your best you, find a good advocate or two that you can trust to help you, and don’t let doctors walk on you. YOU are employing THEM, not the other way around!
27. Something that has surprised me about living with an illness is: How hard people will try to make things for you because they don’t think you’re “really sick.”
28. The nicest thing someone did for me when I wasn’t feeling well was: stood between me and doctors, and spoke up for me.
29. I’m involved with Invisible Illness Week because: I want people to realize that invisible illnesses can strike at any stage of life, and you don’t know who is or isn’t well just by looking at them.
30. The fact that you read this list makes me feel: Grateful
One of these days I’ll actually bother with using my camera instead of my terrible webcam. Today is not one of those days. Got a haircut, took the car to Pep Boys and got its busted tire replaced, got my meds, and got some assorted groceries. Actually quite a productive day, now that I think about it.
I have solved the ‘cannot make myself smile in pictures I know are being taken’ problem by just leaning my face on my hand.
let’s play a game: what will cure or cause autism next?
this week it’s broccoli curing autism
next week, will household pets be a cause? will orange juice be a cure?
will allistics ever shut the hell up?
Unfortunately, we have yet to discover a cure for allism. But for only the price of £20 a day, you can help me stop giving a fuck what they have to say because IMAGINE ALL THE THINGS I COULD BUY YES
there are worse things than broccoli….though yes, allistics need to get their heads out of their asses about “curing” autism.
A family from Hammond, Indiana is suing the Hammond Police department for excessive force after what should’ve been a routine traffic stop turned violent. Lisa Mahone was driving with her boyfriend Jamal Jones and her two children to Stroger Hospital when Hammond police pulled her over for not wearing a seatbelt. Mahone admitted to the violation and asked for a ticket so she could continue on her way to the hospital to visit her dying mother.
Though Mahone was the operator of the vehicle and produced valid identification and proof of insurance, police demanded to see identification from Jones as well. Jones informed the officers he didn’t have ID, as he recently received a ticket. After attempting to reach into the backseat and produce the ticket from a backpack, the officers drew their guns.
Mahone’s 14-year-old son then began recording the encounter with his cell phone and Mahone dialed 911.
According to Fox Chicago, an officer told Jones “”I don’t know you and I don’t know what you’re going to do.” Jones told the cops “That’s why I have my windows up. I’m not no harm to you right now. I got my kids in the car and you’re drawing your weapon.”
Police refused to take the ticket from Jones as ID and ordered him out of the vehicle. “Once the kids were scared, I wasn’t gonna get out of the car and leave my kids in the car,” said Jones. “He was being so aggressive.”
While Mahone was relating the story as it happened to the 911 operator, Jones demanded to see a “white shirt,” a commanding officer. The officer on the scene told Jones “Look at my shoulder dumbass. I got bars.” Video shows that after asking Jones another time if he was going to exit the car, an officer then breaks the passenger window, shocks Jones with a taser, then pulls him out of the car.
holy fucking shit I can’t believe this. HOW IS THIS NOT ALL OVER THE NEWS. what the FUCK is happening with the police across this country.
nothing is “happening”. y’all are just waking up.
this shit has been going on since police officers were used to recapture escaped slaves.
Reblogged, as always, for commentary
It took me a couple of weeks, but I am currently on the phone talking to someone to schedule physical therapy.
This is not a small accomplishment in terms of my nerves. I have serious reactions to physical therapy because of my bad prior experiences. So… it did take me a couple of weeks, but I got there.