My sister is always there to put a smile on my face. I think it affected her and my dad a lot when I had a seizure in the hospital. They didn’t really take me as seriously until 10 doctors were swarming into my hospital room and my heart rate monitor was going through the roof. 😅
The good news is that with 2 bags of IV fluids I was up and walking the very next day (which never happens). Now it’s just an issue of finding the right doctor who will prescribe it, because mine doesn’t “believe” in IV fluids. 🙄
Needles make me faint, but that’s a battle for another day.
Just because you don’t see it, doesn’t mean it isn’t there...unless I have my cane with me, or I’m in a wheelchair, no one would guess that this otherwise healthy teenage girl is dealing with a life-changing chronic illness. Never judge a book by its cover!
#chronicallyill365 Day 167:
See the makeup? See the outfit? See the smile? This is one of the many faces of invisible illness. Behind all of this is me in so much pain that I feel like I'm going to throw up.
I went to the Summer Solstice in town today. Watched the parade, walked around, met a fellow Posher. I didn't think I'd be able to walk home. Once I got home, I rested a bit before going grocery shopping. By that point, I was in so much pain that I felt like I was going to collapse and throw up. Once I got home, I went to bed and slept for 6 hours, I couldn't stay awake even if I wanted to.
But, I bet you wouldn't realize any of this because of this smile.
I’ve been fainting and having symptoms since I was 7 years old...but I really began my journey about a year ago and thus began the long road of getting a real diagnosis! Today is the last day to submit your picture! I’m happy I joined just in time for this movement.
My partner, @justjeswithones, and I helped out her mom, @crams_dk, with her jewelry booth (@completelycrafty & @bulletsforbabesjewelry) during the Round Rock Market Days recently -- and MAN, WAS IT HOT! So we thought we'd share these nifty little hot weather tricks for when you're working! 1.) Keep a Frogg Toggs chilly pad under your working vest, and continually re-wet it as it dries out. We had to re-wet mine about every 15-30 mins during the hottest part of the day. We just poured water right under my vest to soak the chilly pad, while I kept on wearing the whole ensemble. 2.) Head band "buffs" are great for around the neck. You can wet them over and over, and pull them up to cool the ears, too. This got a few giggles from passersby. They're often sold in multi-packs, too -- so keep a rotation of them good and wet in the cooler that you're sure to have with you! Swap them out regularly! 3.) If you're going to be in a stationary area, throw down a yoga mat with an old towel on top of it, and soak the whole thing down before sitting/laying on it. The yoga mat works as an insulator so the ground doesn't dry out your towel too quickly. Throughout the day, get your partner to re-wet the whole area for you to lay in -- bonus points if you can get them to throw down some handfuls of ice from that cooler, instead! These are fun to munch on to stay cool, and they keep the wet towel cooler for longer, as they melt. 4.) Obviously stick to shade when you can, but when you can't, and you're walking on pavement, asphalt, concrete, sand, etc -- be sure to wear your protective boots! (@ruffwear has an awesome line to choose from! We love everything of theirs!) 5.) Drink LOOOOOOTS of water, and don't over - do it! Remember our body temperature already runs hotter than our human partners, and it's tougher to cool us down! #servicedogintraining#servicedog#servicedogsofinstagram#assistanceanimals#assistanceanimalintraining#assistancedog#ms#multiplesclerosis#vasovagalsyncope#hotpup#hotdog#summersafety#righthandmanRhyder
#chronicallyill365 Day #whatever :
I thought I'd be getting a bunch of exciting mail this week, but, none of its come yet. I sent in the application for my disabled parking permit renewal in early May, and I still don't have it yet. It's been a MONTH! I've desperately needed it at points over the past month, but I REALLY need it for an event I'm going to tomorrow. If it doesn't magically show up in the mail in the morning, I may not be able to go. Unless someone volunteers to carry me from the general parking area. But I don't see that happening.
My Kate Farms shipment hasn't come yet. I was told Monday that it would be here by Wednesday. Nothing. I called bright and early this morning to see what was going on. Come to find out, my primary care hadn't signed an insurance form. We got that straightened out and I'm crossing my fingers it comes Friday. I feel blah without that nutrition. I'd be pretty pumped if that and my disabled parking permit came tomorrow.
Still no approval from Medicare about my wheelchair. This week is a month that they've had the prescription for it. I'm holding out hope that it comes tomorrow as well. The wheelchair would have been super awesome to have for tomorrow (see above), and it could have been had the letter of necessity not taken so long.
And I'm waiting for some cards from G-PACT. Not as urgent as any of the above, but will be useful to have. The cards are so that I can bring my backpack and nutrition drinks into places. These will be useful for July, but I'm not going anywhere that would require them soon.
Time to raise my blood pressure. Along with my funky pain reaction, I also get vasovagal syncope where my blood pressure drops when I am stuck with a needle. Basically, my body thinks I'm being eaten by a sabre tooth tiger and pushes all my blood downwards or something to keep me alive and that makes my blood pressure drop. I believe it's related to the pain. But most doctors seem to think it's a purely psychological reaction. But anyway, to avoid going into shock (slim chance but one never wants to take it, especially with my crazy body), I'm just going to jack my blood pressure up first with tons of salt now. Then oral rehydration fluids after. Oh the fun. #stupidconditions#whatisthis#chronicillness#fibromyalgia#vasovagalsyncope#stupid
Dear @jlo our first day away from #teesside started out great! We went to the #gym , sunbathed and paid $75 for our #cocktails (which is positively free by #Vegas standards). By 12pm that all came to an abrupt halt with a trip to the ER🚑 But don’t worry, Nurse Ben fixed me (after he’d been on his lunch break). So, we’ll still see you tomorrow🎉 P.s your people didn’t call. They must have the old num 🤦🏽♀️. DM me hun☺️ #alwaysadrama#vasovagalsyncope#dehydrated#sleepdeprivation
Reason #486538670 that I do this... To feel better.
Anytime I'm not eating mostly nutritiously, and moving my body, I'm just... Unwell. There really is no better way to explain it.
I'm out of it, sluggish, headachey, usually coughing/sneezing/wheezing a bunch, this is when I usually get all kinds of rando infections/flus/colds, my issues get crazy exacerbated (AKA PCOS = no periods, mega increase in facial hair, my hair falls out in clumps, Vasovagal = I feel dizzy and on the brink of passing out all.the.time, Bipolar = I'm everywhere, not steady, not content), I also feel bloated, painfully full, uninspired, dull, depressed, unhappy with my capability... Dude, if sipping on a superfood shake once a day, eating a salad every so often, passing up a cupcake and moving my body for 25 minutes/day erases all of that for me... Sign me the eff up.
I'm there now, and feeling real good. Time to keep it up 🙌👊💪❤️
UPDATE: So I finally followed up with my PCP after the 5th episode of passing out.
She decided to do a full work-up which includes blood work, a 24 hour holter monitor (pictured here), an echo and an eeg, as well as a cardiology referral.
Spent a full day in the OR with these wires & endured a full workout tonight with them as well!
While being on the holter monitor I was given a journal to document when I take medications, eat, pee/ 💩, feel symptomatic, and whenever I’m doing activities. (One downfall is not being able to shower with it on 😅, 🐦 bath it is!).
Tomorrow is the eeg & echo.
If you all enjoy following this workup for my syncopal episodes let me know and I will continue sharing! ❤️
My little brother sent this to me. It's so true. I have #neurocardiogenicsyncope also known as #vasovagalsyncope It means my blood vessels don't contract or dilate properly. As a teen I fainted or went extremely dizzy pretty much every morning before I got out of bed. I missed a lot of school because of this. And I hated it. But now it's just me ... and a great excuse not to go on scary rollercoasters!
It’s a weird experience, especially when you’re a) not healthy and b) still trying to navigate your way through years of body shame and self doubt.
Let’s dive into this.
I don’t date much. I don’t have the energy, I don’t have the money, I live in a town where most of the population is either too young or too old, and, despite all my talk on here, I’m still deeply self conscious about my disability, my mental illnesses, and my body. But I want to! I get lonely, I get horny, I want to hangout on a regular basis with someone who isn’t my dog (no disrespect to Rupes). So how do I go about that? No seriously, I’m asking.
How do you overcome the anxiety that comes with dating someone new? The vulnerability of letting someone in? The insecurity of when and how I let someone know that I have these issues and that they WILL come up?
I think the obvious answer, at least to the first two questions, is just to do it. Take that chance. Make a date or two or three, even if your heart is pounding and your anxiety levels are skyrocketing. Nine times out of ten by the time you get there you’ll realize it’s not as scary as you thought it would be. That, despite being kind of awkward, you’re actually not terrible at this.
That last question, though, is trickier. I’ve handled it well and I’ve handled it not so well. My dates have been the same. When I first starting dating, I conveniently left out the fact that I might faint at any moment or that my anxiety and depression can leave me incapacitated for a few days. That never ended well. I’ve been upfront about my disability and been both impressed and unimpressed by my dates’ reactions. Some have been really good about it, understanding when I’ve had to cancel or that our dates end up being few and far between (downside of living in a small town and dating people in the city – city people rarely want to come to you and I don’t always have the fare or ability to get downtown), but it’s hard to make a real connection when you only see each other once a month. Some have not reacted well, like the guy who suggested I practice fainting into his arms 🙄 or when they just want to “save you”.
“Grieve the things you have lost”
Proud to have another piece of my writing published by @theinvisibleillnesses 💛
Make sure you check out the other incredible stories on their site.
Link is in the bio 🔗
IS FAINTING CAUSED BY A VASOVAGAL REACTION AND IS THE MOST COMMON CAUSE OF FAINTING.
IT OCCURS WHEN AN OVER STIMULUS OF THE PARASYMPATHETIC NERVOUS SYSTEM IS TRIGGERED BY I.E SIGHT OF BLOOD OR EXTREME EMOTIONAL DISTRESS.
THE RESPONSE RESULTS IN A SLOWING OF THE HEART RATE AND A DROP IN BLOOD PRESSURE. THE DECREASE IN BLOOD FLOW TO BRAIN CAUSES A LOSS OF CONSCIOUSNESS.
My #boringactsofrecovery today is to go outside.
I spend about 90% of my time indoors. Partly through necessity, and partly through fear.
My health conditions are deeply affected by the weather. Any change in temperature or air pressure or season is always a potential trigger for fainting spells and migraines. Summertime can be especially difficult because of the heat and humidity, which can mean dehydration, another big trigger for me. And seeing as my disability is so unpredictable, in terms of when I’ll faint, how long I’ll be out for, and whether or not I get any warning before (usually not), being anywhere that isn’t “safe” is pretty scary.
BUT. Sometimes it’s worth conquering those fears. Sometimes it’s worth taking a risk because the reward will make you happy. I can’t spend my entire life hidden away in my bedroom, and I really don’t want to.
So today I’m going to sit outside in the sunshine. Not for long, but enough to make me warm and happy. And maybe tomorrow I’ll sit out for a bit more, or go somewhere.
It’s okay to be nervous, to be afraid, but you can’t let those feelings hold you back from living your life. That is my #boringactsofrecovery for today and forever.
As always, I want to hear your own #boringactsofrecovery . What scares you? What have you braved through fear to get some happiness? And what is your favourite summertime activity? (Maybe that’ll give me some inspiration!) Comment below or right your own post, and don’t forget to tag or use the hashtag because I don’t want to miss your inspiring words!
Good Times 🙃
I think the medical peoples would categorize those symptoms as a vasovagal response. I call it a trip down memory lane to that time I discovered Boone’s Farm - almost passed out & nearly pooped my pants that time too. It’s not always inversions & light roast coffee my friends. ..
I’m a’ight now. Got through it by laying down and trying to breathe fully & deeply. It’s amazing what that can do for the body.. still need to figure out what poked me though.
#welcometomyworld#spoonieproblems there are far worse problems to have ..prob due in part to #bodybuildinglife
edit: I didn’t post this for sympathy, it was a weird thing that happened & there was a breath lesson in there so I decided to share it for anyone else that may ever have this or a similar experience 💖
Today has been a tough day. My pain levels were pretty much unbearable even with the highest level of painkillers and I had to spend all day curled in bed. Spencer isn’t usually allowed in my bed but today I made an exception and put his blanket up so he could lie with me which made me feel that little bit better. When I applied for a CP, I worried I ‘wasn’t ill enough’ to need one and someone would be much better off making use of a fantastic dog than me. But especially on days like today, I realise I do need an awful lot of help and can’t wait to get his training going at home to make things a bit easier for me. Even the fact he got the phone for me today, and took my socks off when I was too hot, which I couldn’t have done because of my pain levels and would need to get mum means that both her and myself had a bit of independence today. I’m vlogging about the journey and all the questions you’re firing at me, so if you want anything answered let me know. There will be a delay in when it gets published just so we have time to make sure we are well and settled but il keep you updated on the date for our YouTube channel 🐾. #caninepartners#servicedog#assistancedog#chronicillness#ehlersdanlos#myalgicencephalomyelitis#vasovagalsyncope