A Day In The Life: The Emotional Rollercoaster I Can’t Seem To Escape


The Struggle / Thursday, January 11th, 2018 / 8 comments

Earlier this week I wrote a post about how stress affects our disease. I read one of Dr. Afrin’s patients was told that it may even be the number one trigger for us! I can believe that. It definitely triggers me into degranulation hell if I don’t keep it in check, but it’s not easy. As I pointed out in that post, life is stressful. This disease is stressful.

Facebook is stressful.

I woke up to snowfall and a dreary, gloomy sky. Neither of these bother me too much, especially since I have really bad sunlight sensitivity, so the overcast sky is a blessing. I can open the blinds and enjoy the view on days like today.

The snow isn’t a big deal either, because I rarely leave the house to go far and when I do I have a lot of help with things like snow plowing and shoveling. My hubby and neighbors and friends and family are all great, especially on days like today. They know I’m limited in what I can and can’t do, and they compensate for my disabilities. The hubby even plows a nice, wide trail to the chicken coop for me so I can tend to them and collect delicious, fresh eggs while he’s at work.

I have a really great, albeit small, real life support system and I am eternally grateful for that. (I also have hens that are laying almost a dozen fresh eggs a day in the dead of winter, which is amazing!)

Since I’ve been feeling better these last couple of months I’ve been trying to work on building my online support system, too. Not only for myself, but so I can help others who are struggling and trying to find their way in this crazy life in the mast lane. Because, as you know, we’re ALL in this mast cell craziness together and I feel like it’s my mission in life to spread more #mastcelldiseaseawareness.

As much as my friends and family and neighbors understand, they don’t know what it’s like to live with mast cell disease.

Nor would I want them to! I *might* wish this on my worst enemy, but only because I’m mean like that and I have no enemies so it’s hypothetical anyway.

We are always advised to join a support group whenever we have something challenging or difficult to overcome in life. So, since I can’t leave the house and since there are ZERO local MCAD support groups, I (re)joined social media after starting and stopping a few years ago, back before my diagnosis. I enjoy Twitter, but it’s limited. But I found a couple of great MCAD support groups on Facebook and started a couple of my own. I was thrilled when I connected with a local patient and found out we share the same doctors! We even share the same pharmacy!!

We are officially Dr. Dave’s biggest fans, we decided right away. We even made plans to get together for our first official ‘Eastern Idaho MCAD Support Group’ meeting so we could plan on doing something nice for Dr. Dave and his staff, who we owe so much to. My son was going to join in so there would be three of us, since he has mast cell disease, too.

Then I woke up to find I’ve been locked out of Facebook.

Again.

Insert bad word here.

It’s the second time it’s happened in less than a month since I became active on there. The first time it happened, I think, was because I had a flood of friend requests coming in the first few days and, being the nice person I am, I accepted a bunch of them. I soon realized my mistake and I assume I got dinged for being the target of spammers. It resolved pretty quickly, within a day or so, and after that I was careful who I accepted as a “friend” and followed the rules as best as I could.

There are sooo many rules on Facebook now, apparently.

Today I read that they can lock you out for security reasons for using a different device or browser without logging out first. That’s exactly what I did, and I’m pretty sure it’s why my account is under review this time. I followed their instructions and uploaded a picture to verify it’s me, and even sent an email to them to explain my mistake. And groveled to get back in.

As soon as I hit ‘send’ I realized that I was covered in hives and feeling extremely dizzy. I could feel myself swelling and thought, oh no. What have I done?

The anxiety of just trying to get back on stupid Facebook sent me into a degranulation episode!

Then I realized that many of us are extremely stressed out by social media, and not just because it is full of show-offs, argumentative people, spammers, and full of etiquette and rules we have to learn and follow and remember despite swimming in brain fog. Or we keep forgetting to do things like verify our accounts and browsers and log out of one computer before logging in on our phones.

Sigh.

Is it all really worth it? I don’t know. I was getting a lot of traffic here from it, but I get that anyway because my dear readers share my stuff on their accounts whether I am on FB or not. My groups were gaining new members daily, but the emotional rollercoaster has left me sick again. Between that and the snow we postponed a trip over the mountain I was planning to take today and looking so forward to.

My first long trip in two years, mind you!!

At least my new friend and fellow fan of Dr. Dave noticed and emailed me to give me her cell phone number so we can still chat and hopefully meet in person and be part of each other’s real life support system, so that made me feel a LOT better.

Yay!

I can’t get too excited, though, because that triggers me, too, since the universe is a jerk. I decided to stop trying to log into my account until the 72 hours are up, and even then, I don’t know that I’ll be putting so much energy into Facebook after I get it back on it. If I get it back on it.

It’s kind of like the Daily Mail, which I used to love to hate and now avoid for my health. I know part of it’s my own fault but it’s quickly becoming more aggravation than it’s worth.

🙁

Mother. Wife. Patient. Keeper of Huskies. MCAS blogger & advocate. Living life in the mast lane with the Grand Tetons & Yellowstone as my backyard. You can also find me blogging at Life In The Mast Lane and The Empty Nest Housewife.

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8 Replies to “A Day In The Life: The Emotional Rollercoaster I Can’t Seem To Escape”

  1. Hi Mitchell
    thank-you so much !!!!

    It is tuff. And for some reason our systems that have this are more sensitive to things that most people aren’t. And unless they could be in our shoes they could never understand.

    A soul sister from the east coast,
    Lynn

  2. I quit social media last year because it was so overwhelming for me to keep up. I don’t miss it but I do understand your frustration. Sorry you had to postpone your trip, too. Living on the flat lands makes a ‘trip over the mountain’ sound so exotic lol.

    Jenn

    1. It does feel overwhelming when I’m on there, too, and I just got started! Whew. It’s so quiet today without Facebook. I did enjoy meeting other people with MCAD and reading all the advice on the support groups though. If they let me back on I might have to limit myself to just one day a week or something. And lol about my trip sounding exotic thing. That made me smile. It’s actually quite beautiful. I hope someday you can leave the flatlands and come visit my “backyard”, Jenn!

  3. I never did join Facebook or Twitter or any of them because I like my privacy and being anonymous. Plus who wants to see what I ate for dinner. I eat the same things every day it would get boring.

  4. I was talking to another patient who feels stress is his biggest trigger and advised me, more than anything, to get on a serious stress reduction drive! Great advice. Social media is a tool but an often misused one. Maybe, as with so much in MCAD, it is whether the emotional investment is worth it!

    1. I do believe stress and anxiety triggers this disease to be far worst in so many of us. A stress reduction drive sounds like a great plan. If I could, I would head up to the hot springs right now and soak my stress away. My goal is to get back to being able to do just that. Ahhh.. 🙂

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