Most of you know I have been having medical problems, though some of you may not. Those of you who know of my problems are mostly seeing my 'crazy diet', but little else. I hide my symptoms well, but this is also an 'invisible' disease.
I want you to know, I have Mast Cell Activation Disorder. Because this is a rare disorder, it has taken over 10 years for me to be diagnosed. When I first started having symptoms, this was not even recognized by the World Health Organization. Awareness is growing, and I imagine there are many other people out there who, like me, are wandering around with a whole host of problems that are all 'in their heads'. But this is real. I am taking many medications for it. But the medications do not cure this, they just make it easier to manage. The medications are like sand bags being placed along a rising river. They do not prevent the water from rising, but they increase the tolerance of the surrounding area.
The water of the river is forever fluctuating, but when it gets too high the sand bags will not be enough. That is why I follow my 'crazy diet'. Certain foods 'trigger' or cause the water to rise higher. There are many other things, other triggers, I avoid. Maybe you noticed. Exercise- including exertion like climbing the stairs, lifting heavy things, or even walking too far, motion- especially the fun things like swings or roller coasters, stress- like deadlines, arguments or even getting scared at the haunted house, heat or cold, scents or odors, medications -did you know I can't even tolerate ibuprofen?, chemicals, lotions, hair products, and more. My medications make it possible for me to look fine, but I still need to avoid certain foods, environments, stresses and activities. If I do not avoid these, I will get sick, and it can progress to a life threatening situation very quickly.
So...
If I do not wear makeup, paint my nails, use perfume, or even appear to get my haircut often enough, know I am not depressed or uncaring about my appearance. I am trying hard. It is because the skin and hair products affect my system.
If I need to stop and rest or 'call it a day' when we are having great fun, know it is because I have physical limitations and my body is telling me to stop. It is not because I am not enjoying our adventures.
If I do not eat certain foods, know it is not meant to offend you. If I refuse the cookies, chips, ice cream, homemade soup, or fresh crusty bread I am not doing it to make you feel badly. And I do not expect you to remember I cannot eat these things. I appreciate that you think of me and want to share your enjoyment of them with me. Please don't fell uncomfortable when I say 'no thank you' and you are suddenly reminded of my unfortunate affliction. I am trying to get along without needlessly dwelling on the issue, you should also.
If I shy away from gathering at a restaurant or seem standoffish at a party, remember I cannot partake in the food and beverage. I cannot say, 'wow, that's a great dip! Who brought it?' I can't comment about the red wine or even the chocolate candies. I can't tell you about the great new restaurant that moved into the neighborhood or the best place to get coffee. But I also don't want to launch into my illness, and how I am doing. Remember, I am not going to be able to tell you it is better. And I don't want to bring the conversation down. I don't want to complain, but I also don't want advice on things I could maybe try. I am not looking for you to fix my problem. I am here because I want to spend time with you and talk to you about the other things in our lives, family, kids, houses, parents, jobs, hobbies, projects.
If I do not eat at your wedding or graduation party, or pack my own food for your house party or even cart my lunch bag to your favorite restaurant, understand I am not doing it to make you uncomfortable. Please remember I may be uncomfortable pulling out my 'different' food, and doing the 'bring your own thing' to a place that sells food...charges for extra plates....and may not be accepting of outside food in their place of business. Remember I am doing it so I can be here, enjoying my time with you, celebrating you.
If I invite you to my home, know that I am doing it because I want to see you, and spend time with you. If I cook, know I am trying to be sensitive to the differences in our eating habits and food preferences. I am trying to not force unusual foods on you, but know I am going to try to keep things as simple as possible. Stress can also trigger an increase in symptoms with my illness so I try not to overdo it by making multiples of each dish. Yet I do not ask you to bring anything because I can't be sure I can eat it, and if I can't I may find I want to duplicate it to satisfy my needs. If I can't eat your chocolate cake, I am going to want a dessert for myself- so I still need to make a dessert. I already go without so much, I really don't want to go without in my own home.
If I swoop into your home carting along my own foods and take over your kitchen to prepare my own meals, know it is not to offend you. It takes a level of comfort for me to do this, so you are in my inner circle. I appreciate your understanding and I really do believe you are a great cook! Know I just need to be incredibly careful.
And finally...
Understand I can have unpredictable symptoms including headache, flushing, skin rash, stomach upset, diarrhea, heart palpitations, brain fog, shortness of breath, and low blood pressure.
Remember I need to have access to restrooms, water, frequent rest periods, my own foods, fresh air, a way to warm up or cool down quickly, and my emergency medications such as my benadryl, and epi-pen.
Remember I am still me, and I want to enjoy my life doing the things I can, with you.
Comments
Post a Comment