What is a typical day? I used to be able to tell you this until January 4, 2014. That is when everything that became typical about my life, my health, my existence, became consistently ATYPICAL.
I feel like a Turtle walking around in a hollowed out shell moving slowly and hoping I can make it far enough and long enough to get to where it is I am heading. Where is it I am heading? That is a great question. I often forget the answer as I am heading in so many directions at once on so many different levels….even if I am sitting perfectly still and quiet.
HOPE can only get you so far. I try to hold myself back from the dark abyss of resentment and emotion that try to pull me over that cliff of depression that reminds me of all my limitations, injuries, pain, and I feel robbed. I am robbed not only of my function, endurance, memories, peace, and joy. I feel robbed of opportunities, freedoms, laughter, and just simple existence.
I guess all my new normals that are no longer really new….yet new enough to feel like fresh wounds with salt dripped into them on a daily basis are who I am now.
I wake up sometimes more tired than when I went to bed. Sometimes I wake up ready to conquer the world only to be exhausted by the time I muster enough energy to actually get dressed or to take a shower. Then other days I am blessed with a full day of accomplishment. I actually get out of the house and make my way through the world ignoring all the struggles that seek to slow me down (pain, confusion, forgetfulness, dashed joy, excitement, fatigue, bathroom breaks, sadness, and the seeming lack of motivation for life all at the same time).
What is a typical day? The only typical day is that I know I will face…..is a mountain of uncertainty. Will I have an accident? Will I forget something important? Will I be late? Will I remember to use my words and respond instead of just reacting emotionally? Will I get everything done I have put on the list? Where is the list? Did I make a list? Where is my planner? Where is my phone? Where is my charger? Where are my shoes? okay let’s go….oh crap, I forgot to put on pants. Okay pants on now…wait where did I put my bag. Do I have my planner, my phone, a pen? My charger….wait…gotta pee…okay flush toilet wash hands phone rings get planner talk on phone …kids talking “mom mom mom” wave them away finish on phone….head spinning I have everything right? Feeling irritable already. Oh no I read the time wrong now I am super late. I totally need help here feel like I am drowning. Feeling flooded and overwhelmed or not just yet but feel it coming on. Try to avoid it. Deep breathing, Relax. Husband asks if he can help or he doesnt ….kids a distraction or they aren’t. Okay let’s go…wait I need to have water with me. Man am I thirsty. I have to remember to take my meds. Okay do I need meds now? What is my pain level? Lets skip pain meds I can do it. Oh my gosh what was I thinking? I have to be somewhere but I can’t put my finger on it. What was I doing? Where am I going…I don’t remember. I look at the white dry erase board what is today? I cannot remember what day it is. Look at phone. OH okay…I have it now. Oh no I got my days wrong I don’t have appointment today….wait yes I do I looked at the wrong day. Okay lets go. What am I forgetting? It feels like I am forgetting something. Where’s my list of questions for the provider? Where is my List I know I had a list….oh that’s right I forgot to do the list because I fell asleep. Okay out the door, let’s go. Get in van, let’s go…. pat pockets for phone; crap – muscle spasm; damn this headache, I will be fine. I feel like vomiting. I am a passenger n vehicle and moving now….crap I left my bag at home with my planner. Panic what do I do? Focus, look at phone distract yourself. You are safe. It’s okay. No planner can’t go back or will be late. Have to have planner MUST have planner. Panic ensues or it doesn’t. Go get planner or skip it if running behind which is often even if ready to go early. Leave without planner day ruined. If leave without phone feel lost and alone day ruined. I have alarm reminders and email and ways to communicate with people if I need help with something. In vehicle “no don’t hit us” *car swerves in our lane or slams on their brakes or gets too close to us”. Oh my gosh I cannot wait to get home. Okay I can do this. Quit wimping out Caren push push push. You can do it. Not so bad right….oh crap another muscle spasm. I am really hurting today or not really hurting as much. I am happy but so worn out and I haven’t even done anything yet; or I feel great and then someone zooms in front of us or we see someone almost wreck or act crazy…instant fear and nap time to escape brain shuts down I am done. NO! I have too much to do. NO sleeping. I am sorry I didn’t mean to fall asleep. Are we there yet? Thank God I did it. I knew I could do it. Why can’t I get anything right? I hate forgetting so much. Slow down. I want to go home. I feel like crying every little sound is annoying. Talking is annoying, the wind when the windows are down is annoying. Man my back hurts, my neck is killing me. Wow my shoulder feels better since surgery now…I love those people. I think I am going to cry I am so happy my shoulder is getting better. Oh my gosh how will I get through this day. I am already running low on energy. Wait…where’s the bathroom. I have to go RIGHT NOW….great a piddle I hope noone can tell. Did I bring extra underwear? Oh yes I did…. get relief or no I didn’t shame lingers. Good morning world I love you or I can’t stand any of you at this moment and I don’t know why. Shhhhhhh not so loud the lights hurt my eyes. I am okay. What? You want me to answer what question? Yes I am okay. Why are you staring. I don’t care if you stare I am proud to be alive or man I can’t get away from the pain to I just can’t stay awake I am sorry I AM DONE…my brain is done. Can we go home now? Think Think Think what was I doing? Oh That’s right, smile act normal. Stay quiet or not so much. Wash rinse repeat every day.
Some days are a blessing. Calm quiet, no appointments, no need to think, no need to go anywhere or do anything. Time to sleep to recover from the days I was just existing.
So I focus as much as I can on researching myself learning about how to get my quality of life back leaving no stone unturned. Yet some days defeat wins a round and I cannot even get out of bed to get dressed. Sometimes I am hurting so bad the tears flow and I cannot stop them hard as I might.
I feel defensive like I have to try and explain why I am late, moving slowly, hurting, forgetful, struggling in some parts of my day and not others, yet there is nothing to defend. I feel like I have to explain everything as I go to educate others when they just don’t understand. That is not my job. What is a short answer? I don’t even know really anymore. So I just say it’s a good day to be alive.
I detest being late. I detest even more forgetting things. Important things. Conversations, appointments, easy things, important things. Why can I remember some things and not others. Why are there so many gaps. It is what it is I keep telling myself. Apply your strategies Caren. I can be vicious with my words and equally as generous. I can be brave and fierce and face the pain or I can crumble like a wadded up piece of paper. The only thing that is consistent is my inconsistencies.
No, it’s not fair, it’s not productive, it’s not ideal. It’s not easy. Yet it is an opportunity to appreciate life in a different way and I am constantly caught between never giving up hope and just not giving a crap anymore. Sometimes the fight to recovery is just so painful and long and lonely and utterly draining. Sometimes you just feel like damaged goods overwhelmed by trying to not forget all the things that are important to make it through each day. Sometimes each moment. Then it passes and all is well with the world again…for just a little while. I talk yet noone hears me. I listen but their mouth moves and I don’t hear their words. Never the same. Nothing can explain it. A different language or no talking at all.
The journey on these dusty roads are not without exhaustive effort. Hard as you try to keep from getting dirty you are bound to have accidents, forget important things and be late to things. If there is one lesson to be learned in all of this – it is to face your fears and do not let them eat you alive. Forgive yourself for forgetting and remember that you know you better than anyone else. Sometimes invisible effort. Sometimes invisible limitations. Sometimes invisible pain is more painful than the fractures that resist healing and like those fractures need added support. My goal is to pave those dusty roads with healthy recovery and continue to use tools to survive with. I am not stupid by far, just different than what I once was. So I will mosey on along like the turtle….. slow…. to control the pain and thrashing muscle groups. Slow so I respond and not react. Slow so I can gather my thoughts. Slow so I can hold on to what I need and release what is not effective. Slow and steady wins the race. Isn’t that the ending?
Damaged goods? I say yes. Destroyed? I say no. Fight or flight? Let’s get those wings!