Unpredictable: the name of the game. 


Life with a chronic illness means a lot of uncertainty. A lot of waiting. It comes with the turf- I haven’t met a single person who doesn’t struggle to some degree with the uncertainty and the waiting game. Bodies are unpredictable, so we don’t know how we will be from day to day.
Recently, I’ve been struggling even more so with this. I’ve been dealing with severe allergies, requiring me to wear a mask and be extremely careful with what I come into contact with. Six bouts of anaphylaxis in the past few weeks..you could say I’m a little on edge.
It can be quite scary and unsettling when you wake up and have no idea whether you will have a good day, or whether you’ll be in the ER needing breathing treatments and epinephrine. Additionally, sometimes it feels like despite all the difficult and dangerous symptoms, you and your medical team aren’t doing enough to fix the problem. Do not pass go, do not collect 200$.
I’ve really had to remember the past few weeks that I can and will get through this. These are some tips for dealing with it all.
One of the most important things to remember when you’re in this situation is to stay calm. Stress impacts how your body will respond. I know it’s hard to stay calm when you are experiencing scary symptoms (this is something I struggle with) but keeping your mind calm is helpful.
Distract yourself when symptoms are tough. This is something that helps me chill out when I’m worried or upset. Watch a movie, color in a coloring book, listen to an audiobook or talk to a friend. Find something that works for you, and use it.
Focus on the positives in the day. Small improvements are still improvements. This is so hard to remember, especially when it seems like you are sliding backwards. Even the daily improvements are a huge deal. Sometimes when I am struggling, I try to make a mental list of what has gotten better. This helps me stay positive and motivated.
Reward yourself. This is not easy! Dealing with symptoms and medical treatment on a daily basis is draining. Try small rewards that you can focus on and use to motivate yourself. For example, when I finish physical therapy, I will reward myself by watching an episode of a show.
Remember: your journey is your own. Comparing yourself to others and their health is not productive, and will just end up making you feel worse. Everyone has a different response to pain, to symptoms, and to stress. Someone you know may have similar symptoms but may have a completely different way of dealing with it. Always remember that suffering is subjective. There is no way to compare because everyone’s health is completely unique.
It’s not fun or easy to deal with unpredictable symptoms. It’s hard, and can wear you down mentally and physically. But remember… you have survived 100% of your worst days. You’re doing great.

One thought on “Unpredictable: the name of the game. ”

  1. I love your positive attitude in the face of extreme obstacles. It’s simple, to the point, and 100% true. It’s hard to realize or remember how strong you are until after you make it through a really tough time. During the onslaught, you don’t get the option to tap out, you just have to muscle through it and sometimes you can’t even hope for “the best”, you just have to hope for survival. I get the sense that this is what you have been doing a lot of lately with all your bouts of anaphylaxis.

    When I had just entered healthcare and was very “green” I didn’t quite get this struggle, and on a certain level I never will because I’m not the one who is personally going through the suffering. However, I had an old, seasoned paramedic say a simple, to the point, and 100% true statement that has resonated with me more lately than ever before. After dropping off a very sick patient onto my ER gurney, who looked more dead than alive, he leaned in towards my wide eyed stare and simply stated “It’s not YOUR worst day.” At the time, I didn’t have much time to reflect on his words and just started my nearly mechanical actions to try to save this person’s life, but his statement has circled through my head more times than I can count over the years.

    After reading your latest blog post, I could hear the paramedics words again ringing loudly in my head. I began to think, most people have “a worst day”, you have “worst dayS”. This is one of the hardest things that separates chronic illness from any other type of illness, trauma, or disease process. All of those other ailments have a finite amount of pain, suffering, and enduring. Chronic illness is infinite and unrelenting. I’m consistently inspired by your strength and courage for yourself and also for all those that you advocate for. I know that loving you and knowing you has played a huge role in my practice as a healthcare worker. I am forever changed by you, and your words of wisdom ring just as loudly as the paramedic’s from so many years ago.

    Thank you,
    Ann

    Like

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