Fibromyalgia, Chronic Illness and School, Target Should Do Better, Thank you ACA, and a Kinder Gentler World for Spoonies
Links From Fibromyalgia Interview :
What is your disorder? *
At what age did your disorder become a daily issue? *
Who were you before your illness became debilitating? *
I hadn’t really figured out who I was for sure. I was a week away from my 16th birthday when I was diagnosed and by that time I was in pain every day and had been for 3 years so I don’t really have a time I can point to in that I didn’t have pain when I was old enough to really have a firm identity. However, I loved to golf before my pain got worse and before I was diagnosed and figured out why I always felt worse after an hour at the driving range so I miss that and also I had a whole plan for college and what I would do as a freshman which got turned completely upside down. (I went to a private Christian college prep school and because of that all 4 high school grades were made to go to college day and I had a whole plan after that first years)
What would you do if you were not dealing with your invisible illness? *
Oh gosh, what a hard question to come up with an answer for. I think I would probably either be in the movie industry or coding but I honestly don’t know.
What would you like people to know about your daily life? *
Everything I do takes so much more energy than you think. I take a nap every day at lunch or at least lay down because otherwise, I won’t make it through the day. I may be smiling and laughing but my back is still hurting constantly. If I say I’m tired it is completely different then your tired. Sometimes my brain just doesn’t work right.
What would make living and moving in the world easier for you? *
Less craziness to get my pain meds🤪 no but really just more understanding and better research to bring about better medication so we can stop treating the symptoms and start treating the cause
Do you have any life hacks? *
Oh ,lots I have an ac adapter in my car so I can plug both of my heat pads in and have heated seats in my car when my back is not behaving. Putting things where I know I will see them so they hopefully don’t get forgotten. Lots and lots of reminders on my phone. Notes app on my phone. Hug the puppy when you get down!
What kind of support do you get from family or friends? *
My mom is great super supportive and my go-to insurance guru as she is an hr person for her job! My brother and dad have a hard time understanding my choices we are working on it. My friends are great! My small group girls let me come and barely say anything at all on bad Fibro fog days and just let me be there. I also have two friends who I go to the movies with most weeks and they are great they are always ok if I have to cancel last minute and will also just come to hang out with me if I’m not feeling like going anywhere
Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *
Oh, so many times. My favorite has always been being told (yelled at) I should not be using my grandma's handicap placard in the target parking lot
How has your invisible illness affected your relationships? *
I lost most of my friends in high school because people either didn’t believe me or because they just didn't want to put in the effort to stay friends when I wasn’t there every day. It has been a big factor in my relationship with my dad and brother
Is there anything you are afraid to tell people in your life? *
I’m pretty open about everything but I haven’t ever really told my mom or anyone in my family how close I got to suicide when I was severely depressed in my failed year at college (that is a whole crazy story)
Does the fact that your disease is invisible change how healthcare professionals treat you? *
Ones who aren’t my normal doctors yes!
What is your best coping mechanism? *
Soaking in a Hot tub or bath and Great Dane Cuddles
What are you the most concerned about and the hopeful for in the future? *
I’m most concerned about finding a guy who is willing and able to handle all of this. I’m most hopeful for my changing family relationships
What is your favorite swear word?
Oh gosh I don’t swear that much but when I do it’s usually fuck
What is the hardest and/or best lesson your condition has taught you?
It has taught me to live in the present and only plan so far in the future
What is the best purchase under $100 that helped your life
My U-shaped body pillow (my current one my mom made for me and cost more but my original was about 75)