Saw this over on the Authentic Human Stories blog and wanted to share my answers with y’all! (I’m not sure how to tag the author on the mobile app but I’ll try to figure it out, lol)
Introduce yourself ! What’s your name and where are you from?
I’m Robin and I’m from North Carolina, USA.
What type of content do you produce online?
I write about real faith (struggles and successes), grief, loss, mental struggles, finding joy in little things…pretty much the human experience.
What’s your favorite comfort food for when you need a pick me up?
Anything with chicken or cheese in it!
Perfect song to jump start your morning?
I have a pretty big “happy playlist”–here are the tracks, in no particular order:
- September – Earth, Wind and Fire
- Got a Star Piece – Super Mario RPG: Legend of the Seven Stars OST
- Hey Baby – Bruce Channel
- Celebration (Single Version) – Kool & The Gang
- Night Changes – One Direction
- Wipe Out (Live) – The Surfaris
- Theme from Ghostbusters – Ray Parker, Jr.
- Ray of Light (Radio Edit) – Madonna
- Yes – Merry Clayton
- It Takes Two – Marvin Gaye & Kim Weston
- Victory over Culex – Super Mario RPG: Legend of the Seven Stars OST
- December, 1963 – The Four Seasons
- Electric Slide – Shannon
- Shut Up and Dance – WALK THE MOON
- Beauty and the Beast – Angela Lansbury
- Uptight – Stevie Wonder
- Dance Again – Jennifer Lopez
- Kung Fu Fighting – Carl Douglas
- Ode to Joy – Beethoven
- Good Lovin’ – The Rascals
- Pieces of Me – Ashlee Simpson
- Uptown Funk (feat. Bruno Mars) – Mark Ronson
- Let’s Get Ready to Rumble – Jock Jams (found this on Youtube I think xD)
- Tequila – The Champs
- Everybody Have Fun Tonight – Wang Chung
- Cheerleader (Felix Jaehn Remix Radio Edit) – Omi
- Dancing With Myself – Billy Idol
- That’s the Way It Is – Celine Dion
- Let the Groove Get In – Justin Timberlake
- Let’s Groove – Earth, Wind and Fire
- The Rainbow Connection – Sarah McLachlan
- Jailhouse Rock – Elvis Presley
- Tunak Tunak Tun – Daler Mehndi
- MOON PRIDE (Theme from Sailor Moon Crystal – Momoiro Clover Z
- Happy (from Despicable Me 2) – Pharrell Williams
- Dancing in the Street – Martha and the Vandellas
- For Once in My Life – Stevie Wonder
- Be My Baby – The Ronettes
- Shout (Full Version) – The Isley Brothers
- Moskau – Dschingis Khan
- I Wanna Dance with Somebody – Whitney Houston
- Old Time Rock and Roll – Bob Seger & The Silver Bullet Band
- Why Should I Worry – Billy Joel
- Gimme Some Lovin’ – The Spencer Davis Group
- Rockin’ Robin – Bobby Day
- Cupid Shuffle – Cupid
- It’s Your Love – Tim McGraw & Faith Hill
- Dance to the Music – Sly and the Family Stone
- Chasing the Sun – The Wanted
What does being a spoonie mean to you?
For me, it means managing my energy so that I at least do the stuff that’s most important to me on any given day. Sometimes that means husbanding my energy for a few days before a long car trip, stressful appointment, or walking-intensive adventure; sometimes that means using the random burst of energy I get at 2am to finally clean the things that have been annoying me for weeks. (It also means that folks who aren’t spoonies feel like they can comment on my life and how well I’m running it, but they just have no clue what I go through so their opinions matter about 1% to me now.)
What are your goals for the present and the future?
For the present:
- Get a sleep study done to see if I do have sleep apnea since I’ve been grinding/clenching my teeth at night and feeling very very tired all the time. Solving this issue might just help me have more energy!
- Keep training as a vocal performer.
- Work on my NaNoWriMo novel and my other creative projects.
- Bring in a little money via my tutoring job.
For the future:
- Get my book(s) accepted by an agent, edited, and published
- Get my music copyrighted, written down, and published
- Get married to the love of my life ❤
- Look after my Dad’s health and needs
What are your favorite hobbies and past times?
I love to write (poetry, short stories, and fiction), compose music, sing, and make hobby websites. I also love spending hours on YouTube, Netflix, and Hulu, as well as random games and social media.
Do you speak any other language other than english ?
I am moderately good in French, though I’ve forgotten a lot since my high school and college days. I can understand or make good guesses about most French I encounter, and I can speak intermediate-level phrases.
What’s your official diagnosis?
Multiple old injuries to my knees, ankles, and feet, resulting in shooting nerve pain up my legs and joint instability when walking. I also have flat feet, which has contributed to balance issues and ankle issues. I have a handicapped placard for my car so that I don’t have to walk long distances. I also had PTSD (released from treatment February 2018), and now possible depression or some other mental disorder (we are not certain yet).
What are you self diagnosed with?
I think I might have sleep apnea from what I can tell of my symptoms, and I also feel a strong kinship with those who are ADHD–I feel like I’ve been inattentive, hyperactive, emotionally unregulated, disorganized, and prone to sensory overload and meltdowns since before I can remember.
When did you first start seeing symptoms appear and when were you diagnosed?
My physical condition doesn’t really have a diagnosis per se, but things started going really haywire during my college years, when I had several falls in a badly designed shower environment and also tried stupidly to get to class during a couple of ice/snow storms. As for my mental condition, I was diagnosed with PTSD in September 2016–my therapist estimates I spent about 25 years undiagnosed but suffering, since symptoms of it began to show up when I was around 8 years old.
What’s the worst part about your illness?
The constant shooting pains in my legs, even when lying down, take a toll on my days. I used to get up and move around so easily, and now I have to plan out my moves through the house, plan my activities so that I don’t get too sore or tired…it’s just a lot of junk a relatively young woman shouldn’t have to go through. Also, my PTSD used to make it difficult to get out and about because I was afraid of being followed, shot, mugged, kidnapped, raped, etc. while just going on errands.
What has your illness taught you?
That health of any kind is not permanent and is actually quite fragile, so you gotta take care of it–even if others don’t understand!
What do you wish other people could know about your chronic illness?
That it’s not a choice I make, and I don’t get to decide how I feel every morning or what I’m able to do. The pain decides. I hate being this powerless but there’s very little that can be done, apparently. (Also that sometimes doctors don’t quiiiiite believe you when you say you’re in pain and need help, especially when you’re fat and female)
How has your condition affected your mental well being?
I’m definitely less upbeat than I want to be. Constant pain will wear on your mind like that.
What are some things you never thought you would miss or struggle with when you were able bodied (if you have a progressive or onset condition)?
I never thought I would struggle with stairs. Our house is nothing but stairs and I used to get up and down them like it was nothing. Now I even go without doing laundry as long as possible because of all those (pardon my French) damn treacherous stair steps between me and the washer/dryer.
Phrases or advice you are tired of hearing?
- “Just think positive!” When I hear this, I wish I could Force Choke the person like Darth Vader.
- “Well, why don’t you just take a pill for it?” I can’t just take dozens of pain pills for the rest of my life, unless I want to blow out my liver/kidneys.
- “You could just decide to feel better, though! It’s all about attitude!” See above about Force Choking. LOL
Hot or Cold Relief?
Cold for my ankle swelling, heat for my knee pain and nerve pain in my feet.
What types of medications have you taken and which one has worked for you?
I usually just do Advil–it helps take the edge off enough to get around. I’ve not gotten any stronger stuff for it because I don’t want to get too dependent on it, plus I don’t have a primary care physician right now so it’s hard to get stronger stuff. I don’t currently take anything for my mental health.
Worst side effect of medication you’ve ever experienced?
Thankfully, I have had no side effects from Advil so far! I try to take it as sparingly as possible for that reason.
What type of western and natural medical practitioners are you accessing?
Chiropractic adjustments and physical therapy exercises. For my mental health, I got EMDR therapy for my PTSD from September 2016-February 2018.
Do you use mobility aids and if so, how do they help?
When my ankles and feet really get sore and painful after long periods (1-2 hours) of unavoidable walking, I use a cane–it helps me balance, but doesn’t help a lot with the pain.
What are some of the best items you have found to help ease your symptoms?
A great mattress is key. I wish I’d bought this one I’m sitting on right now several years ago! Also supportive and comfortable shoes that are also easy to take off, so that I don’t have to bend and risk falling over trying to get out of them.
What’s your self care routine for when you’re feeling blue?
I usually plug in one of the funniest movies I own on DVD and have myself a laugh fest. Either that or I have a good cry, write my feelings out, and take a huge nap. LOL
What’s your bedtime routine?
I get my teeth brushed and flossed, apply facial moisturizer and lip balm, and listen to ASMR videos through my phone or tablet.
What do you do when you can’t fall asleep?
I watch YouTube videos till I’m falling asleep on them (LOL)
How do you cope when you have a flare? What are the prevalent symptoms? How do you let others know that you’re not feeling well?
I rest in bed a lot when the joints are sore, and if I’m having a really bad mental health day I stay in the house and try to surround myself with media that makes me happy, including creating my own if I feel like it. Generally I just feel very sore and very tired, often cranky and hangry (lol). I usually text folks and let them know if I was scheduled to do something and it’s just not gonna happen today.
Tell us about some interests that you’ve discovered after becoming chronically ill!
I found I like to watch home decor and crafting shows (first on HGTV back in the day, now on YouTube)–I have no skill for stuff like that, but I sure like seeing others do it well!
What can friends or family bring you that might help? Any gifts, food, etc?
I love the idea of folks coming by to visit–they don’t even have to bring anything, just themselves if it’s a rough mental day. I also appreciate when they bring food I can easily heat up in the microwave, since I’m a bad cook even on my best physical days. xD
What’s the number one piece of advice you could give to others who have just been diagnosed or going through your illness?
Things will change for you, but this change does not have to be permanent. You can claw your way back slowly. It’ll take time and lots of help, and you may never be quite the same again, but you can regain some of what you lost.
Who is your number one support?
My fiance and my dad are both amazing and take on lots more stuff than they ought to just to make sure I’m cared for. When I am more ambulatory, I try to return the favor when I can.
What are things that others or society can do to become more accessible and supportive?
More handicapped spaces (in reasonable places, not out past Timbuktu!!), and better education for non-handicapped folks about why it’s important to leave those spaces for those who need them. Sometimes being able to find a handicapped space or not is the difference between me getting my groceries or not.
Do you take part in support groups and if so, have they been effective? Are you part of any online support groups?
I haven’t been a part of any support groups in recent years…my experience of support groups has not been good. Instead of folks talking things out and helping each other cope, I’ve seen support groups become zones for complaining, lashing out at others, and policing what others can/can’t talk about (even if it’s key to a person’s recovery to talk about stuff). I don’t want to bring “drama” in, nor do I want to deal with someone else’s burdens when I have enough of my own, so I just don’t bother anymore. It’s sad, but I have found my “tribe” of folks I talk to anyway, so I honestly don’t miss it.