My Battery’s Broken, Please Understand..

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.

Invisible Illness…

The pain is there, inflammation too, but doctor’s are clueless, what should I do?

I have an invisible illness that has taken hold, slowly crippling my way of life. I had my dreams ahead of me, a future to look forward to.  I was in the gym getting myself in shape, discovering that I had a love for running. I was studying for the LSAT, getting ready to start a new journey, one that I had been looking forward to for many years. Master’s degree down and Law school in my future, perfect for my type A all in type of personality. I’m no wimp.  I like to get my hands dirty. In fact, I’m a bit of a micro-manager.  I rather do things myself, I have high standards, no one will do it as well as I could.  But all that has changed. I’m not who I am anymore. I have an invisible illness.

Probably one of the most difficult things with an invisible illness is not what I suffer with daily, but the doubts in my doctors eyes, the suspicion, the questions. How do you prove what you feel when pain can not be measured? When holding up your phone in bed causes your arms to throb, cleaning causes your body to flare up in pain, weighed down by invisible weights pulling you towards the floor. Just walking up the stairs with those heavy weights is enough to make me pause and rest, draw in my breath, and gather my strength.  Noises smothering you till you just want to crawl in a quiet dark hole and let your mind be at peace. Movements overwhelming, filling your vision till you just want to shut everything out and rest.

I’m hypersensitive. I feel every ache in my body, my bladder only slightly filled yet the sensation is every present, a tiny gas bubble searing it’s way in my insides, my heart beating against my breast, a tiny hair irritating my cheek, the way my breast squish against my bra, the artery pulsating in my stomach, my dry eyes, painful joints, aching muscles, horrific stomach pains day in and day out. I feel everything. Surrounded by a sea of sensations waiting for my next escape. The drugs dull the pain, the sensations, the heavy fatigue, pushed at bay for a few hours relief until the effects wear thin and the feelings return.

I have an invisible illness, one shared by many but never the less, ignored and pushed aside, treated as though it is a disease of the mind and not physical, physiological or neurological in nature as the symptoms suggest. Remember when epilepsy was a mental illness, locked up in an institution because doctors didn’t know how to handle what they couldn’t measure?  History repeats itself.  Rather than telling the patient that technology has not caught up with the process, they blame them instead for PTSD, anxiety, somatization, and depression. Anxiety may be my cross to bear, but logic rules my mind. Can they not handle defeat? Do they not know that they are not infallible, not all knowing and all mighty?

One day they will look back and know.  They failed us.  They denied us, ignored us, and left us to rot. They had no answers, but they will…one day.

 

Please share, comment, or like on this post.  Most of my posts are just for myself as writing helps with my frustrations, but I think my story represents a large number of people in this world.  Even a quick comment to say hello!  I just want to see if this post is being seen, if you can relate.