Frustrating Feelings

I wanted to make a post about the frustration and heartbreak that comes along with being sick. (I hate saying/typing that out loud) ESPECIALLY if it’s not a very well-known illness, and I understand it’s new information and that I was mostly, a healthy child, but looking back a few things we didn’t have an explanation for, MCAS fits… I miss the girl I was before I got sick, going out to eat, walking through a parking lot without having to hold my breathe because cigarettes are sneaky and dangerous. I had 16 piercings at one point in time, and then I became allergic to a lot of the metals and took everything out, I really miss them but I’m so reactive right now my doctors want me to look into eliminating MORE things. It makes you start feeling a little crazy after a while…

Just because you are unaware of a trigger response doesn’t mean I’m not holding back tears (or a scream). I honestly don’t like using the word ‘Allergic’ because people automatically think of blocked airway or swelling up like a balloon and when I don’t react how they expect me too then I’m being dramatic/ over exaggerating/ making it up. Fun Fact anaphylaxis can show itself in LOTS of different ways:

Whole body- fainting, lightheadedness, low blood pressure, dizziness, or flushing

Respiratory- difficulty breathing, rapid breathing, shortness of breath, or wheezing

Skin- hives, swelling under the skin, blue skin from poor circulation, or rashes

Gastrointestinal- nausea or vomiting

Other common symptoms- fast heart rate, feeling of impending doom, itching, tongue swelling, difficultly swallowing, facial swelling, mental confusion, nasal congestion, or impaired voice. And no, not all these symptoms are life threating but who wants to be itchy and break out in hives or rashes on their body or deal with mental confusion or having an anxiety attack all the time… no takers, yeah cause it’s not a good time, and normally takes DAYS to recover fully…

Any and all of theses of these can happen when triggered, but it’s not caused by an allergy, it’s how Mast Cell presents itself and because they are released into your blood it gets full access to the entire body, organs and all and if not managed properly can reek-havoc on your body, to the point it’s life-threatening. And again, I haven’t even explained the layer of ‘The Histamine Bucket’ which I feel just needs it’s own post because I struggled to understand it myself and had to learned the hard way, a few times to fully grasp what it meant…

When I say this illness flipped my world upside down, I meant ever aspect, I had very close family members (who I thought would always have my back) tell me that I was out for attention or so dramatic/ finicky/ prissy because I just HAD to have stuff a certain way. It killed me to explain myself over and over just for people to roll their eyes or joke about it and tell me to stop blowing it out of proportion . Do you think I enjoy missing out on my favorite foods/candies/drinks/activities/smells?? Well, I don’t, and I’ve been known (despite my hubby’s wishes) to push my body passed its limitations and those famous (I told you so) words ring in my head as I pay dearly for not listening (face palm). Honestly though it’s because I’m attempting to feel normal again/ not be the buzz kill and I ignore my body and the many restrictions I have (at least the ones I’m not scared of) because I WANT to have fun and stuff my face until I feel like I could explode and lay out in the sun. My body says “Slow your roll girlfriend, you can’t eat unless it’s homemade and the ingredient list has been examined with a fine tooth comb, and don’t get to excited or worked up to much or I’ll cause body trimmers so bad that it’ll make you look like your having a small seizure and I swear if you sit in the sun longer than 10-15 minutes I’m gonna break out in hives, make you so lightheaded/dizzy it’s gonna make you pass out.”

I’ve never understood why people question my sickness, but it happens more then I care to admit and the people who really know me know that I don’t lie (sometimes I’ll try and spare your feelings and be as gentle with the truth as I can, but I won’t lie). I’m also not one for ‘all eyes on me’ because I’m awkward and have anxiety to spare and they only amplify when the spotlight is on me. I also HATE asking for help, I’d rather do it myself and painfully I can’t always do that… I hate that my brain tells me I’m a burden and a pain to deal with (or maybe it’s those voices of family members that doubt my reality, living rent free in my head…) but I’ve worked REALLY hard the past 2 years to find my boundaries and stand firm because my health depends on it, and it is most defiantly NOT a joke. MCAS exposed all my foes pretending to care as they giggled behind my back and since they have been exiled out of my life, which was hard, but I survived, and I actually feel better because they aren’t around to trigger me (sorry not sorry). Now that I’ve done it, I’m not scared to keep doing it (does that sound harsh??) I’ve just seen the difference of people who actually care verse the people that deny I’m sick and the difference makes me want to cry… I’ve literally cried at friend’s houses because they have gone above and beyond to insure I don’t get sick as apposed to some of my own family can’t be bothered to just not wear perfume or smoke a cigarette while I’m present/ in the area/downwind from said cigarette. Being on guard all the time is exhausting and overwhelming and sometimes it takes a lot for me to stand up for myself and tell someone their perfume makes me want to barf (pretty scent but direct line to my gag reflex or trigger a migraineso bad I can’t move without throwing up).

See how frustrating an invisible illness can be, how soul crushing it can be…Good! Just a friendly reminder that just because we look healthy on the outside doesn’t mean there isn’t a harsh and brutal war going on inside… So, be kind and don’t force what you see/know on someone, someone who’s battling something you know nothing about and BECAUSE you don’t know about it means they are winning (even if it doesn’t feel that way). The more you insist on silence, the more you get closer to what you insisted on and you show them that you are Not a person of comfort. If you’re fighting, I hope you know the people in your life who support and protect you and I hope you know you’re not alone and even when you’re going through hell, keep going because you didn’t make it this far, just to make it this far and better days will always come, so take care of yourself and be sure you’re there to enjoy them!!