I want to do a little visualization for you. Imagine you’re in a clear box. It’s a nice box…you have everything you need. It is an air-tight, temperature controlled box so you’re comfortable. But it’s immobile. You can see everyone around you succeeding and starting their own adventures. You can see the fun they have when you can’t be there. You want to join them, but your box can’t move. As time goes on, your friends and family start to move away from the box. It’s almost like you’re forgotten. You decide to break out of the box to follow the people you care about, but the second you open your box, you’re exposed to a number of things that are harmful for you, and you know that you HAVE to remain in your box in order to stay healthy. People who you care about used to check on you frequently, but those checks have become further and farther between. Some friends who said they love you have completely disappeared. It’s so lonely in this box. It’s isolating. There are a few who are constantly by your side, and as much as you love them, you want a variance…you want to see the people who claim they care about you. When anyone who decides to pop in does, it’s usually because they don’t have anything better to do, and I’m an afterthought. I could have plans with someone, and because of cause A, they either cancel, or change the plans so you have a shorter amount of time with them. It’s hard being that person. It’s hard being the 2nd choice all the time. You become angry and lash out at those few who are around all the time. You don’t mean to, but it’s a natural reaction when you can’t do the things you want to do. You don’t feel any different from your normal self, besides the physical things the box protects you from. You don’t understand why people don’t seem to care anymore. You want to just feel just as ok outside of the box as you do inside the box. But. It’s not safe. And all you can do, is watch the people who you care about disappear.
This is your life with MCAS. This is what I have been experiencing lately. And to try to make people understand, I thought that this was a great analogy. I am sensitive to temperature, humidity, and the sun. So I literally can’t go outside at all on the days where it’s stinking hot. Even 80* is too much for my body to handle. Not only does it make me physically sick, but the sun gives me hives, and the heat attacks my joints making them swell and hurt like hell. So I live for the days when it’s 75ish and partly cloudy. As long as the temperature is decent, I can find shade and enjoy some fresh air. However. I’m also allergic to smoke. Any kind of smoke–grills, cigarettes, and bonfires are my biggest triggers. So, while I live for the days where it’s 75, so do my neighbors. And at any chance they get, they have a bonfire. They grill. They also spend time outside. Which makes me run inside and have to stay there. It’s so frustrating, and I’ve grown very angry this past week. I can’t walk to get the mail. I can’t even let my dogs outside. If you know me, you know I’m a very independent person (surprise, right?) and I HATE having to rely on my parents for everything. It sucks! I love them for supporting me, but there are some things I wish I could do for myself.
I always try to find the lighter side of things–I like to play games in doctor’s offices. I like to flirt with the cute nurse or doctor who is taking care of me. I like to always have a smile on my face. This week has been hard. I don’t know how to control my emotions. Everything I say has a harsh tone to it, like I’m attacking. I have lashed out at those who I love and care about. It’s not on purpose…and I genuinely don’t know how to handle it. I wish this post were more happy, and about how well I’m doing…but this is the truth. I have my bad days as well.
So, now you might know a little more about how MCAS affects the psyche of a person. I normally have a smile to help hide the pain, but I can’t do it anymore. The temperature is supposed to be absolutely beautiful tomorrow, and I’m praying that nobody starts burning anything until the evening, because I fully plan on sitting outside as much as humanly possible tomorrow.
Keep me in your prayers…they do help.
As always, all my love,