Reminders that Everything We Do Costs Us a Spoon

Reminders are a double edged sword..on one hand they keep us on task and able to stay focused on what needs carried out on the day to day basis. On the other hand they are a slap in the face of what was and what now is. I have a about a million reminders on my phone and in my calendar and planner..I can’t exist without them..I however think I could exist without the reminders of where life is now at. It’s a odd and funny thing to remember and always reflect on what once was. To walk around daily with a checklist of things I just can’t carry out that I once did and never took a second thought to appreciate. I use to have full days..days that began in the early morning and ended in the late night.. filled with activities and outings that I could master. Lately my days have been filled with the reminders I can’t exist with full days or even full weeks. With remembering who I was.. these reminders are crushing to my psyche. The spoon theory has become a way of life.. starting each day with a handful of spoons and delegating my spoons and energy to specific outings or things that need to get done.. lately I have been passing out my spoons too frequently and by the end of the day or week it reeks havoc on my health. I have to remember my gas tank is never going to be full and I have to gage my travel on what has to be done and what destinations have to be traveled to maximize my energy. The reminders of who I was and how I was able to pass out a million spoons a day..is a slap in the face for I always try to live up to that person with that stamina. I have come to realize I have a certain amount of energy for one or two things a week and those things being in a controlled quiet and sensory calm environment. Doing too much back to back takes days away and once again is a reminder I can’t keep up with the old me. I always hit this point.. always come to this realization I am no longer carefree and can pick up and make the most of my days. I now have to be calculated with my time and energy to make sure I get to the things I can’t miss. Simple things like choir concerts or trick or treating back to back wear me out and make me physically ill.. those are things I can’t miss nor do I want too.. and things that I once could do along with a million other things and not even think twice about or lose days in bed as a result of being present for three big life events in a row. Going to dinner with friends lately has been too much.. the lights the background noise and the over stimulation of trying to keep up in conversations just take a toll on me and make me hate the way my brain and body processes this once normal and fun experience. Once again these reminders these changes make me feel like I am falling apart and dropping the ball for those around me. Everyone should have a friend that can make it out to see them and keep plans.. and I once again am reminded I am not that friend. I let people down constantly and it eats away at me.. for this is not who I am or want to be. I have found myself lately getting lost in conversations.. saying the same phrase over and over again even if it doesn’t fit into that conversation. My brain can’t process what is being said to me and can’t put together a organized answer back to what is being said.. word finding issues and process time now has made me develop a defense tactic of saying awesome or amazing all the time and sadly sometimes those phrases don’t fit what is being said to me.. when this happens it makes me revert inside myself and not seek out conversations with others or makes me just stay quiet and not want to be apart of what’s going on. So I shut down and stay away.. the fear of not being able too keep up.. the fear of not getting what someone is saying.. makes my head spin and hurt.. but even more makes my heart and spirit feel crushed. Some days I wish my disabilities were visible.. so others could see exactly what is going on inside of me.. so I could never get questioned for being a baby or lazy or just a drama queen. I am actually none of those things and on my worst days.. no one even knows.. I deal in silence.. for I hate having this on my plate and never would want to put or force it on another’s plate. No one wakes up each day and wants to be a burden or dark cloud.. no one wants to continuously say no I can’t do this and then have to explain why you can’t do this.. no one would chose this and I’m realizing no one will prob ever fully accept this is the way it will be now. Going to the grocery store is an event I have to coax myself into doing.. it without a doubt is one of the most draining and over stimulating activities that has to be done. I have to give myself a pep talk to get out of the car to go in..and usually I can’t go there alone. I know on grocery day.. that is the only event that will take place that day.. I also know I have two stores I can only go too for things..two stores where I know where everything is and know the people who work there.. so I can find some peace while there. I’m 40.. a mom.. a grocery store should not be this big of a deal to go too.. but for me and my brain.. it’s a very scary place and weekly event. Cosmic bowling is a big no for me as are indoor jump places.. sadly tried recently to do both and ended up in the car most of the time and throwing up. I hate walking out of a place that is supposed to be fun and exciting.. I hate walking away from my child and memories to be made.. bc I am sick and can’t handle what is going on around me. I hate I can’t make it through a dinner at Applebee’s with my mom and daughter bc there are a million conversations going on.. as well as music and the noise from the televisions.. I hate that when I walk into a store or any public place with yellow lights.. I instantly start to feel a shift in my mood and my brain starts to gear up into overdrive. I hate that it’s a big deal for me to make it up to the dance studio to see my two best friends and get a hug from them..two woman on the bad days that pick up my child and give her experiences I just can’t. I hate writing this and complaining but the reminders at moments get to be too much. Do I have good days where I can pull things off.. absolutely.. but these days are a result of making sure the days before are as calm and as managed as they can be not to miss out on what’s ahead. And life as we know can throw us a hundred different curveballs a day and often we can’t micromanage those to make it to what has to be done. I hate making plans and getting myself excited for things I want to make happen. Recently had a trip planned to see a very important friend.. I should have been there today.. but because of the days that lead here I am at home..missing out on my friend and the time that we should have gotten to spend together. I hate the anxiety and depression attached to all of this.. the guilt and shame of not being the person I want so badly to be. I hate getting anxious when I know I have to be somewhere and the worry attached too what will happen or how I will handle the environment I must go into. I hate the days my hands won’t work and I drop everything and can’t even get the key in the door or get my money out to pay for things. Recently got my new car tags and for three weeks tried to put them on my car myself.. I dropped about a million swear words and lost my cool because I couldn’t get the sticker off the sheet and onto my car.. and eventually realized I had to ask for help. I hate the fact I can sit here and write all of this.. but can’t verbally say this or express myself that way anymore.. my thoughts get scattered and my words get juggled and mid sentence I forget what I was saying. I hate meeting new people.. for I don’t really have much to talk about and I freeze up and feel out of place.. I hate being asked what I do for a living and then have to explain what living is like this way. Believe me I hate more then anything not working anymore.. I love being a social worker and love helping others to empower themselves and not feel alone. And I especially hate most days I feel alone and cannot grab the inner strength to empower myself. I have made it to the gym four days this week and that is a huge victory for me.. but I pass out several spoons to get there and workout. I once ran six miles a day and played volleyball one night a week.. and now after the gym can’t do much more that day. This past weekend I had a very important birthday party to go too for a very special little boy in my life..it was loud and crowded..a hundred different people.. neon lights.. loud music and conversations going on around me..I spent most of that party outside.. had to keep leaving to calm myself down.. and my head hasn’t stopped pounding and my eyes haven’t stopped twitching since that day. Such an important day and life event and another reminder I just don’t live in the world I once did. Not all reminders are bad tho..I daily am reminded that I am Rory’s mother.. mother to a 14 year old girl that lives in this world with me and always has a smile on her face and a understanding in her heart for these moments..a wise insightful girl.. who no matter what loses hope or faith in me.. she never gets upset or mad for things we can’t do.. she never gets frustrated for moments where we have to leave or we just can’t be there. She is the queen of silver linings..she is the fuel for most days and the reason I push when all I want to do is retreat. I remind myself that all the bad this has brought to her life will one day produce good from her experiences.. I believe Rory will have a significant impact on others like me in the brain injury community and their families.. she has a way about her.. a knowledge and healing power that I remind myself will bring peace to others. I am reminded that my mother is there.. even when sick and dealing with her overwhelming and scary health struggles..she is the master of passing out spoons and never keeps one for herself. I am reminded daily she is present and will continue to be for the good and bad.. she celebrates the victories I think are foolish and ridiculous to celebrate. I am reminded that I have friends that are family and daily check on us and help us to carry out daily life.. and when I can’t be there.. they make it possible for Rory to never miss out on anything. I have this family of friends that understands and makes me feel accepted and loved even when I have to cancel and let them down..they never make me feel weak and never make me feel lacking..and every once in awhile they make me see me just as they do. I am reminded I have the most amazing doctors and therapist.. they always listen and never rush me when together.. they analyze everything that pops up and help me to regain my health and best quality of life. And I am reminded daily I am here and always have the choice to see the gifts around me.. to embrace the good days and moments even if they cost me other days and moments. I also remember how to climb and fight..I always remember my heart is the strongest part of myself and no matter what never fails me..as dark as it gets at times.. as hard as it gets.. my heart always kicks in and makes me get up. I also have a Daniel..through all of this is calm and peaceful.. never lets me for a second feel bad about what I can and can’t do.. never would let me feel guilt for things he misses out on or has to compromise on. He continues to choose this life and me..he continues to be my biggest fan and tries so hard to make me a fan. He daily tells me we will get through this..we always do.. better days are ahead and will always let me pick what sappy Netflix movie we will watch on my couch. He never complains about the restrictions or changes my health has had in his life.. instead talks about what gifts this life has brought to his. I am reminded daily I have a Kari..a Deena..a Amy.. a Jnell.. a Toni..a Heidi..everyday they make it there job to remind me they are there and won’t be leaving anytime soon… they never waiver or give up.. they make me feel better about unloading on them.. they show me grace and understanding that I don’t often think I am worthy of. Rory has a Belle..a Lilly.. a Irelynn..a Sydney… true friends that just like their mothers make it a point to bring her sunshine on the cloudiest days.. that bring laughter and a lightness to her and make her feel like a carefree kid. I am reminded we have a forever home at IlluminaTe..a place Rory and I find refuge in and always are greeted with a million hugs and smiles when we walk through the door… a constant in our lives.. that heals us both and brings forth indescribable love and support. So as in life..bad always comes with good..and with the hurtful reminders come the reminders of healing. I may remember the life I once had and the person I was..but the reminders of this life and who I am now and who I am surrounded with make me realize and remind myself this is where I am suppose to be.. this is who i am.. and instead of focusing on the cant’s I focus on the I will someday and I will with those around me that remind me I am never alone and I am never less then what I once was. At the end of the day.. I am reminded I had another day.. and that reminder is the best reminder of all.

Shopping with a Brain Injury

To shop with a brain injury is a lot like playing basketball with a tennis ball..it’s frustrating..overwhelming..and just plain tiring..but this time of year one can’t let the stresses or stimulation keep them down! So sure enough my mom and I embarked on our mission..on our third stop we popped in and out of target at the speed of light..mom and I had both had enough of the holiday hustle and bustle..as we were driving off..I spotted a woman wandering through the parking lot..she appeared lost..confused and so overwhelmed..without thinking I got out of the moving car..in fact scared my mom so bad she reached to grab me and I sadly slammed the door on her hand (sorry mom..love you) I walked up to this soul..here she was one arm..switching her other arm between her cane and pulling her cart..I said can I help you..she smiled and said yes..we walked all over the parking lot..and then she stopped and said to me while she started to cry..you must think I am so dumb..I lose my car every single day..I was in a bad accident..have a brain injury..had a stroke and some things just never came back..and without thinking I said I get that..she looked at me and said..you too..and then I said yeah me too..then she said but you look so good..in a split second she corrected herself and said but then again you can look good and be sick..can’t see your brain..we shared our stories..had some laughs about us two tbi gals living in this world..we found her car and I loaded it for her..as I was about to say good bye and walk away she said can I ask you a question..I said yes..she said are you an angel..I said no..I’m a mom who happens to just love people..then she asked if she could hug me..and I said of course..while she held me close she whispered into my ear and said don’t ever let anyone make you feel bad for being you and don’t ever let anyone including your momma tell you..you can’t do something..I started to cry ..we said our final good byes..she apologized for my sister having to wait for me( which made mom smile) and then with a tear running down my cool cheek..I realized in fact I was the one who met the angel!!! Life is so amazing..amazing how our paths can cross with some of the world’s most amazing people..crazy two people struggling with one issue can meet in a random parking lot on a Thursday!! Life is good..and once again found what I needed at Target..just not in the physical sense!!!! Peace and love!!! Smile…I am!

This is a look back from my journal, December 21, 2013.