Living with chronic illness is waking up every day and rolling the dice. The question is never “Will I be in pain today?” It is “How much pain will I be in?”
“Wil I be able to be productive?”
“Will I push myself too hard”
“Will today be a good day or a bad day?”
(Good doesn’t mean pain free. It means manageable)
“Will I have an emergency?”
“Will I get stuck vomiting in a public restroom or port-a-potty?”
“Will someone harrass me for using a mobility aide?”
“How many ignorant comments and intrusive questions will I hear?”
“Is it all gonna hit me at once and will have a random mental break down in the middle of the grocery store?”
“Will I be able to do the things I planned?”
“Will I have to cancel plans again?”
“Will I be guilt triped for canceling said plans?”
“Will someone touch me or my mobility device without my permission?”
“Will someone "help” me in some way and then hold it over me/use it against me later on?“
"Will the pain randomly hit me all at once?”
“What if a flare starts in the middle of doing something important?”
“Will people be understanding if I can’t do something?”
“Will I accidentally hurt myself today?”
“Will the things I do today leave me bed ridden tomorrow?”
These are just a few of the questions we have to face in the morning. Every day is different. Chronic illness and disability fluctuate. What I can do one day, I can’t another. What I can do one day can leave me in a lot of pain and exhaustion for multiple days to come. And some days it won’t. But it will always at least hurt a little. And thats difficult to explain to people. People question the validity of your illness on your good days and on your bad days its “but you could do the thing yesterday, so why can’t you today?” I don’t know. Honestly, I have no idea. And that is the problem. I don’t know what the day holds. I don’t know what symptoms will be worse each day. I don’t know how exhausted or in pain I will be, but even if I wake up feeling alright- they could all come and hit me at any time and any place. And idk how the actions of today will affect my tomorrow. Its all a balancing act, but even though I TRY to plan, it is all too unpredictable. Then there are the decisions we have to make every day, the questions remain the same- but the severity of the results can differ and is unpredictable.
Every meal hurts. I could get naseaus or even violently ill if I eat, but if I don’t eat it also hurts and I could get dizzy and faint. So what do I do? Roll the dice.
Staying at home can either be a good thing or a bad thing. I may need rest and leaving the house could make me have an incident. But it can also be a bad thing, because I may need to get out that day. I may need sunlight and to socialize and to move around. If I stay home, it could make it worse and I could get really depressed. But leaving could make it worse too. And I don’t know which one I should be doing today? So what do I do? Roll the dice.
Showering can ease my muscle and joint pain and I use it as a coping mechanism for depression, but it also can give me a different kind of pain and extreme exhaustion, which may end in me sleeping the rest of the day and waking up more exhausted. What kind of pain do I want today? Roll the dice.
Will taking a nap make me feel better or worse today? Roll the dice.
And on and on it goes. Every single day. And yet, we live our lives. We do what we need to do. We take care of ourselves and if we are able to, we follow our passions to the best of our abilities. I am happy, for the most part, with myself and my life. But that does not mean that I do not struggle. Because I do. Every second of the day. And I am proud of all of you who have to play this game every day too. The odds are pitted against us. The board was designed for healthy and abled people and still we keep playing. And I am proud of us. And we deserve better from the people around us. Every day we fight and every night we win. But in the morning, the game starts again. New rules, new scenarios, new pain.
And so for the people in my life that do not face this level of uncertainty, I need you to understand that I do. That I don’t cancel plans because I don’t want to see you. That I’m not faking it when I suddenly have an episode or symptom flare even though I was fine two minutes ago. That even if I’m able to do things I wasn’t before, that doesn’t mean I’m getting better. Its different every day and I could very well be bed ridden tomorrow. And its not me “giving up” to admit that. Because it is my reality and I do a damn good job of adapting and working around it. My mobility aide is not a prison and you don’t have to be sorry I use it. It makes it so I can do a lot of the things that I’ve always wanted to. It keeps me safe. I don’t choose not to eat something because I’m picky, it could make me very sick. I may have to sit down at any time, even if we are in the middle of a grocery store, so that I don’t pass out. My joints may randomly pop out of place. I could get randomly ill. etc. etc. etc. And I appreciate you sticking around. Because now there is uncertainty for you too. But having a team mate makes the game a bit less overwhelming. But only if the teammate tries to understand. I have had plenty of “teammates” who ended up pushing me towards failure. Plenty of “team mates” who failed to have patience and understanding. Who failed to show me the basic human decency that I deserved. And that continues to make the game harder, because now self doubt is another enemy I have to face. So if I have chosen you to be a part of my life, you don’t have to, especially if it is going to negatively effect both of us. But if I have chosen you, it means I trust you. No one knows the future. No one knows what the day holds. But for someone with a chronic illness, that uncertainty is much bigger, scarier, and more complex. And so I need you on my team if you decide to stick around. I need you to understand the reality of what happens to all of us everyday. Every step is taken carefully. Every action carefully planned in an attempt to bring balance. In an attempt to keep us safe. It is important to have that balance, because if we aren’t prepared we WILL get hurt. Every day there is a chance, but if we aren’t careful, that chance turns into an absolute. And so we step carefully. But even with careful planning, everything is uncertain.
And so every day, we wake up, and we roll the dice.
