My Obstacles with MCAS
Last week the RV Park we’re staying at flooded… it was our first experience with a flood and kind of threw us for a loop. We survived and luckily, we were parked on higher ground, so we didn’t sustain any damage. The water rose quickly, and we didn’t have time to get out, but we packed just to be safe. For most people you would just throw some clothes/ shoes/ toiletries in a bag and call it good. Those with kids understand NOTHING is that simple and adding MCAS on top of all that really complicates things! I’ve often talked about MCAS and what my triggers are and how they affect me, but I haven’t really opened up about what my life looks like because of MCAS. From traveling to going out to eat to visiting family and friends at their houses and how stressful and overwhelming it can all be. It’s extremely inconvenient all around so let’s just break it down.
First going to other people’s houses whether it’s family/friends/clients I must proceed with caution. It’s always awkward because I must ask a lot of off the wall random questions like “Do you have cats that you allow inside and outside?” “Do you have any Scentsy warmers, candles, incense, wall plug-ins?” and if they do I have to ask them to turn off/unplug them because they all set me off… I used to ask what kind of scents they used but determining what would trigger me and what was fine became to thin of a line to balance on and would just ruin the night and my next few days. If they have cats that they allow to go outside I know that I have about a 2–3-hour window that I can hang out and DO NOT touch the cats! And if we’re going over for a dinner party or something that’s going to involve food… I’ve learned to ALWAYS keep snacks on me, but I must ask for a FULL list of ingredients in all the things they have cooked and HOW they cooked it, did they use mayo or vegetable oil if so (most likely) I can’t eat it. Was it cross contaminated with Wheat or Soy if so I can’t eat it. I have a few people in my life that know my triggers and happily prepare meals that I CAN eat and for that I’m grateful because it helps me feel included and less of a burden. I also have others in my life that TRY with all their might to make dishes for me but use the wrong mayo or didn’t read the ingredient list close enough and accidentally poison me, you see why I must ask for a in depth ingredient list… and I do appreciate their efforts but it makes me feel put on the spot and also really bad when they are so excited they made me something and I look a little closer at the ingredients and find a trigger they missed because they are let down, I’m let down and it makes me feel to complicated to even bother with. That’s why I started just packing my own little meals/snacks because it gives me so much anxiety. Also, my triggers don’t present themselves in your typical anaphylaxis ways. When people hear “I’m allergic” they automatically go to airway closing/ immediately vomiting all over the place or swelling up like a balloon. My reactions include but aren’t limited to a lot of bathroom time, rashes/hives all over my body, stomach pains that never stop no matter what I do, headaches, dizziness, fatigue, and trimmers or muscle spasms. To add to that it doesn’t always happen immediately it can take a day or two to show up, which causes people to doubt me or believe I’m making it all up or (my favorite) it’s not as serious as I think it is…but believe me if you were sitting in my boat as the triggers started piling up, only then can you truly understand. Again, I have MCAS, EDS, and POTS and when one gets thrown off balance, they all come crashing down and it’s a long and exhausting process to get them all back to where they need to be so I can be a normal human and lead a “normal” life.
Going out to eat has almost become impossible. Yes a lot of companies are really good about Gluten-Free options but Soy is a whole other ballgame it’s in most fryers at restaurants (vegetable oil) its in chocolate and mayo also, the last time I went to a restaurant I cried, because all I could eat was a plain dry piece of chicken serve on a bed of plain lettuce with no sides, no topping, no sauce it was the saddest looking plate I’ve ever seen. Steakhouses are NORMALLY safe, but I must 20 questions, the poor waitress/waiter who is normally thrown off by all my random questions they have to go get the manager. In-and-Out is one place I CAN eat because that beautiful company uses Sunflower oil AT ALL LOCATIONS (I still always verify this before ordering) and everywhere else is a leaving in tears kind of place, so we just don’t go out to eat anymore. If I’m being honest it’s exhausting, even when I don’t feel like cooking it’s the only way, I’m going to be able to eat. There is no just grab something quick on your way home or call and order pizza or Chinese (and honestly Chinese food is REALLY dangerous because they use straight up Soy sauce in a lot of their dishes. After 3 years I have found replacements for Most things but a lot of things I eat must be homemade/ made from scratch which is super time consuming.
Next is traveling, now since we moved into our trustee travel trailer this one hasn’t been AS hard but still presents some challenges. Before the travel trailer, I had to pack an extra bag that contained a whole bed set up (a fitted sheet, top sheet, blanket/comforter, and my own pillows) also whoever we were going to be staying with had to go through my house visit checklist from the first paragraph, along with all my medications and food/snack options. It honestly felt like packing up a good chunk of my house to go stay the weekend with family. Luckily though now we have our travel trailer, and it makes things so much easier because I have my own kitchen, my own bed with my own sheets, and my own safe space that I can run away too when the need presented itself and for that reason alone, we will ALWAYS have a travel trailer of some kind!
As for my home life soaps, lotions, scents of any kind that my household family uses must be cleared… my poor loving wonderful husband has had to change his soap/shampoo/ beard oils so many times I’ve honestly lost count. If my son spends the night somewhere and takes a bath, I must make sure the soap is safe because if he comes home and had bathed in lavender soap, he can’t touch me and to a 3-year-old that’s rough and it breaks my heart because he must be bathed again thoroughly before we can have serious cuddles because it will make me sick for days. When people come over to spend the night, they must use our sheets and blankets, they can’t bring their Gain/Tide/Dreft scented things over to my house and waft it all in the air (again I’ll be sick for days) and if their clothes reek of those detergents/ strong perfumes/cigarettes no hugs and keep your distance. For all this I’ve been labeled picky, control freak and rude but I’m just trying to stay healthy.
I must constantly be aware of my surroundings, what am I eating, what scents are around me, what’s touching my skin, is the temperature too hot or too cold and it’s exhausting and a giant pain in the ass. If I don’t keep an eye out for all the things it could result in a recovery period that can be a few days to a few weeks. My recoveries are hard on my entire family because I can’t pull my normal weight around, Mommy can’t play the way she normally does, I can’t stand for long periods of time, I have a hard time regulating my body temperature, I normally lose weight because I can’t eat or hold food down, my skin hurts to the touch and burns, stings and itches and all I can do is take my medicine and wait… This all makes me feel like a burden, like I’m to much trouble which really effects my self love and takes me down some dark and twisty roads. My husband is my rock, and he is my first blessing I’m thankful for every single day. Working up to my diagnosis (that took almost 5 years) he kept me sane, and I had to cut out a few people in my life, people who I thought would be there no matter what and instead they questioned me so hard and so much that I started to question myself which in return made me even sicker. I’ve had to start over in so many aspects of my life and I questioned my ability to do it. I understand that this is my battle and I’m in charge of dealing with all that it comes with, but there’s aspects that I need help with, and I’ve found that the people who truly care and want to be apart of my day to day life have no issues taking the necessary steps to keep me safe, comfortable, and healthy. For those that make a big deal of MY illness and how horribly inconvenient it is for them are the people I need to distance myself from and for that I’m grateful because it gives me a chance to see people for their true colors. It’s a challenging life and I’ve learned to take it in strides and not to force anything and to just let life flow. Whatever comes into my life will either stay or go but now I see it for what it is and know I’m better off for it!
