Hell Hath No Fury Like an MCAS POTSie

I haven’t posted in a while because I’ve been a salty mess the past week or so and by salty, I don’t mean in the way most of us POTSies hope for. Those who have MCAS know all too well that anxiety and depression are par for the course when you’re in a flare, and if you have POTS to boot, hide the fucking knives. We can be pure evil bitches to ourselves and others.

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Yep. I had to take a big time out from the interwebs before I started taking hostages. As it is, I had a lot of apologizing to do to my husband. Luckily, he’s a very forgiving guy with enough autonomic demons to be supremely empathetic.

Every time this happens, I decide it’s time to escape. Of course, the things I want to escape don’t actually have an exit. So my brain starts searching for any little imperfection that I can change. I feel small, alone and hateful. I feel completely disconnected from my husband and everything that comes out of his mouth, no matter how innocent or innocuous, becomes a judgment about me, my illness or our marriage. This time the poor guy wasn’t listening or responding fast enough for my liking when I was complaining about how hot and itchy my respirator is, so I decided he was like everyone else, he didn’t give a damn about how I felt or what I was going through and I screamed as much at him all the way home from the grocery. This is all absolutely ludicrous and I fully recognize that now, but in the moment and for two full days after, it’s truly what I felt and believed to be true despite a decade of solid evidence to the contrary.

The thing is I went through this for decades without knowing why I had such a Jekyll and Hyde personality or went through periods where I felt completely unable to control my emotions and yet was perfectly level headed and pleasant the rest of the time. I wrecked entire relationships because of my anxiety fueled rages and depression. I remember my mother throwing her hands up and demanding to know where her sweet daughter went when I was a teen. In my mind, I was just fed up with taking all the abuse and wasn’t going to stand for it anymore, but I knew deep down that much of the time I couldn’t really control my behavior anymore than I could control the weather. Part of me enjoyed this new found voice and the response I got to it. Part of me was terrified by it.

In my twenties, I began to question if it was premenstrual dysphoric disorder (PMDD) as these mood swings mostly revolved around my periods. It wasn’t until the last several weeks that I learned that a lot of women with MCAS have a terrible reaction to menstruation. Hormonal fluctuations can be a real bitch in the first place. Add degranulated mast cells and they’re positively explosive. There’s always been a direct correlation between my declining health the severity of my periods and I’m not at all surprised to find that MCAS is probably the reason behind that.  Of course it wasn’t my period alone that was the problem. While I didn’t have my ovaries removed when I had my hysterectomy, I’ve seen vast improvements, but obviously I still struggle.

Now my anxiety and depression rise and fall with flare ups, such as I’m going through this spring. It’s really been the first time that I could definitively say, “this is an MCAS flare” because I finally have everything else under control. I wasn’t aware that I had a big problem with pollen, but looking back, I have had an allergic reaction to several flowers, so it makes sense. And look what surrounds my apartment, so close you can nearly touch it:

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Honeysuckle, so so much honeysuckle

I also have big issues with mold and since it’s been a really wet spring here in the Ohio River Valley, I’m sure it’s everywhere. Everything is causing me to flare, from foods I used to be able to eat without an issue to my regular hair products I’ve been using for over a year.

Of all the symptoms from all the conditions I have, the ones I hate the most are my anxiety and depression because they make me someone else. I detest being mostly housebound, but I can handle it and find ways to make my life interesting and worthwhile. I can handle the pain of migraines, frequent subluxations, IC and GI issues, I have for decades. I can even take the nausea, though I will grumble about it an awful lot. But not being myself, being incapable of rational thought and understanding, having a hair trigger and losing that deep well of empathy that’s so integral to who I am, that I still don’t know quite how to deal with, even though it may be one of my oldest symptoms.

I am glad that I’m finally understanding that it’s not my fault and while I still apologize (because that’s simply what any polite person should do), I know I can give myself a break when I do lose it and be super proud every time I manage to win a battle with the anxious mega bitch even if I can’t win the war.

 

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