Many have heard of the spoon theory analogy for our chronic illnesses, but when I think of how to describe my illness, a broken cell phone battery comes to mind.
On a really good day, it charges most of the way up but typically it’s less than half way full. Simply using the phone, eats the battery up quickly and it takes forever to charge up again.
On top of that, the charger has some exposed wires that causes shocks and jolts of pain if I’m not super careful when using it. My apps are slow and sometimes they don’t work. I can’t rely on using them.
I feel that my pain and exhaustion is not understood fully. It hurts to get up, it’s exhausting and painful to stand and every little bit of energy I store up, I would like to use for myself to catch up on the long list of things waiting on me. Every time I help someone, I’m using up what little battery that I have and so it puts pressure on me and makes me angry because that’s one less thing I can do for myself.
I use to be the rock, the one everyone looked to to help them out. Now I’m the one that needs that help and yet I’m still being looked at as that rock and they fail to see that it’s been broken into little pieces. No matter how many time I try to explain this, how many times I’ve broken this down, it seems to go through one ear and out the next as I’m looked at expectantly, once again, to attend to even simple little tasks that can be handled themselves.
Talking is exhausting! It’s actually easier on me to type than to have a conversation. I’m not mad at you, ignoring you, or even rude. It simply exhausts me to carry on a conversation and try to pay attention to what is said to me. Please keep it short! When you drag on while telling a story, inside I’m bouncing up and down screaming hurry up and get to the point!!
I’m not trying to be rude, I just can’t pay attention that long and I’m feeling restless and just want to go lay back down. And when you cut me off to ‘hurry up and say something before you forget,’ you’ve just made me forget what I was trying to say in the first place.
Yes, there are days that I can carry on a conversation and feel normal for a while but please pay attention to the signs! If not, don’t be upset when I tell you I’m not feeling chatty at the moment. My processor is running slow right now and my fatigue and pain are at the forefront of my mind.
I HATE to cut someone off and make them feel unimportant or that I don’t care or want to hear you. I also want to be heard and know that you KNOW ME and can see when I’m tired and distracted and not feeling up to being warm and cozy at the moment. Understanding this shows that you truly understand ME and that you care about how I’m feeling.
If you know that I’m ill and you tell me that you don’t want to put any more work on my shoulders because you understand, then please clean up after yourself and not leave a HUGE pile of stuff for me to clean up after you when you leave. That’s really really insulting. (still holding a grudge).
Every little thing you can do to help me, truly helps me. Even the simple things. I do notice, you don’t have to point it out to me. I’m sorry I’m not vocal in praising you all the time.
I know it doesn’t seem like a big deal to you, but when you want something done, please don’t expect me to do it for you especially if it’s not even my task and it’s something you can do yourself.
If your doing a task so I don’t have to, please don’t have me walk you through each little step. At this point, I might as well have done it myself. It cost me energy and takes off one of my own tasks on my list when I have to get up and stand there and speak and use my brain. I wish you understood this!
Living with a broken battery is tough enough. Add cracks, exposed wires, faulty apps, and that’s my life with a chronic illness. I rather it not be but that’s the cards I was dealt so I have to make the best of it and pace and get help and worry only about the big things while trying not to sweat the small ones.
Every little thing you take off my plate, helps me. Every little task you add to my plate takes a little more of the remaining battery life I have left for the day. Please think about this before seeking my help especially if it’s something you truly can do yourself.
Please be mindful that I might not be chatty and talking does take a big chunk of my energy bank. Keep it simple and to the point unless you know I’m having a good day and am engaging with you. Please pay attention to those signs which shows me you listen and you care. Living with a chronic illness is a daily struggle, it’s not something we can just get over or plan for.