Preparing for the Next Attack
Ever have a plan? Ever have that plan get ripped to shreds? I know you do because if you are reading this, you probably have a devastating disease as well or know someone who does. One that refuses to schedule on your calendar. One that refuses to allow you to finish your emergency to-do list. I’m not even going to mention the wish list or a basic to-do list.
An invisible disease to everyone but us
There are times I just have to acknowledge how overwhelming this all feels. Whether you have cluster attacks, migraine attacks, trigeminal neuralgia, or another insidious complex neurological disease that makes you wonder why head transplants aren’t a “thing yet,” this article is for you. You are the ones that can see how my left eye looks significantly different from my right eye before and after an attack. I see the look in your eye that acknowledges this invisible disease which is not invisible to anyone who has it. It is only invisible to the oblivious.
Locked into an attack
No matter how much I connect with others, I am alone inside my head when I am in an attack. This past week was brutal. New symptoms have been thrashing, and I just had an episode of them. Not only was the pain unbearable, but I was unable to open my eyes due to the pain, so not only did I feel shut out from the world, I felt trapped deep inside my mind. Cue the haunted house music. As the terrifying ride began, I tried to keep seeing the daylight, knowing the ride must come to an end.
Tip 1 - Be prepared mentally
Somewhere in the distance, my phone dings. Thanks to technology, Siri read me the message. An understanding friend was checking up on me. The pain was settling in. While there was little this friend could do, I knew she understood. Over the coming days, I had more dings. Each ding was a thread of hope. When I finally came through the other side and logged on, I found several messages. This is community. If you experience these insidious diseases, join a community. Be supportive and allow others to support you. When you are thrown into the fiery pit, you may not be able to communicate, but deep inside, you know they are there - praying, rallying, and sending hugs from afar.
Tip 2 - Be prepared physically
Keep prescriptions filled, check your equipment. On the final day of my episode, a cluster attack was triggered, and I emptied my tank. I switched to a new tank, and something wasn’t right. Because I couldn’t see, I had my daughter come do it, and the same thing happened. Thankfully I already had a 2nd regulator and put that tank on standby. Once I was able to inspect the regulator with my eyes, I found the ring was crumbling. So I am working with the company on that.
Know where everything is. With these new episodes, I literally could not open my eyes for days, so I have to keep things where I can find them blind. I already did this pretty well since when a cluster attack hits, I need things fast, and it’s often in the middle of the night, so I’m flying blind. Have food and drink that is “grab and go.” Medications and treatments that you might need during an attack should be close.
Tip 3 - Live now
Both physically and emotionally, this is necessary for me. I am restocking my pantry with quick-grab items as well as things my kids can fix easily. It is also why I hug, kiss, and tell my kids “I love you” every night and any time I leave the house. I want to live my life with no regrets. I never know what kind of pain day I will have tomorrow. Yesterday I bought five boxes of Velveeta Shells and Cheese! I also have lots of tortilla shells and shredded cheese for quesadillas. My kids found these simple to make. Also, today we will do a micro-adventure because, again, I don’t know what tomorrow will bring. So while I am doing okay today, we will live today!
How do you prepare for your next attack mentally? Physically?
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