- Hermitdom – In the beginning, not only did I NOT want to leave my house to venture out into the outside world, I often was absolutely content to remain in my bedroom where I knew what to expect and it was somewhat controlled and felt safe and comfortable. This was my safe space. Safe from the bright sunlight, safe from too many people talking at once, safe from the general noise of the world outside the room, safe from traffic, safe from having to explain what was wrong with me, safe from having my daily emotional breakdowns in front of others, safe from trying to stay awake, safe from being looked on with judgement or pity, safe from healthcare providers appointments, safe from additional pain from moving broken limbs across the room and down the stairs to face the reality I did not seem to fit in any more.
As time progressed, as my healing progressed, as I was forced out of the room due to sheer necessity to survive my pain, to attend numerous therapies and medical appointments, and to be a parent – I began to adjust to new tolerances. I also learned rather quickly most of what triggers to avoid so I didn’t end up in a full blown panic and puking my guts up from the dizziness, headaches, and a bouncy massively overstimulating environment.
Getting out of the house is a solid accomplishment. There is a lot of planning that goes into getting out and about. There are things to consider that I took for granted before the Polytrauma. Checklists are my friend. If I deviate from this process we have established, things do not go well at all.
Some days I do better than others. I find I am able to be out longer and more often than even a year ago. However, I recognize that I do not have the same comfort level I used to before the polytrauma and I value getting back home as soon as possible. Some days I still have to force myself to leave my room or go downstairs to the main living area of our home. Some days I feel ready to face the world, get outside, something happens that I didn’t expect and NOPE…back home I go.
Trips away from home, the longer the day, the busier the activity, the longer the recovery time afterwards. A one day trip could take several days to recover from. A day of appointments could take a week to level out from again. If you have back to back appointments or requirements, it becomes a vicious cycle of feeling overwhelmed, incompetent, and beyond exhausted – just weary and pummeled.
So planning in advance, if possible, become a requirement. Having someone help you organize your schedule, your time frames, your goals is imperative to attaining those small victories.
Having things to help you cope in moments you can’t be home is imperative.
- Brain Time – I created this term with my family. I wanted desperately to spend time with my kids, my husband, our friends, and people in general. I wanted desperately for things at home to be normal. Since the polytrauma I would feel emotionally and mentally….well…..flooded. Like I was standing in the ocean and wave after wave was hitting me in the face and taking my breath away. In my case though, sometimes their voices all at once, their walking, their questions, their playing, their presence is enough to overwhelm me. It is like there are too many sounds to sort out or too many thoughts to try and think at once. I would become irritable, frustrated, nauseas, and when I wanted it to stop…. it literally had to stop NOW, or I would puke, have an emotional crying meltdown, or just freak out. So we came to an agreement that if I said “Brain Time” all things ceased no matter where we were.
In the beginning I was at the point when I couldn’t easily reset myself, so I would say “BRAIN TIME”, go in my room (or they would have to leave my room), and I would stay there until things settled down in my head. No interruptions, no calls, no questions, door shut. Sometimes this was moments, sometimes minutes, often hours, or occasionally days. I needed absolute silence, a dark room, a warm heavy blanket and to lay down perfectly still. I slept a TON.
As time has passed and I am now three and a half years out from my trauma, I still call BRAIN TIME now and again, yet it is less often that it used to be and I have employed other coping mechanisms to help me reset myself.
However, once my brain has decided it has had enough for that moment, or that day. It’s like it’s done “now” and not even I can control the shut down process. I am learning to pace myself still and manage this more effectively. This does not make for a great social life though, I will say that.
- Directional Instability – Okay I gotta say I have always been the type of person to have a pretty decent sense of direction. I never had a problem getting “lost” when I went into a building, when I drove, or when I was walking somewhere. I was always quite proud of this “inner compass” and it served me well in marching band when I was a teenager, in college and in my work life, when driving an emergency vehicle, when locating items others seemed to struggle finding, and when driving my personal vehicle.
After the polytrauma, it was like someone took that inner compass and smashed it. When I tried to lift my head, the room would spin like just got off a tilt-a-whirl on the Gravitron from a carnival. When they would sit me (and eventually after I sat up on my own) I would be so enormously dizzy that sometimes that labyrinth of puking was unavoidable. No to mention the throbbing headaches that seemed to be everywhere and made my forehead feel like it was 50lbs all by itself pulling me forward. The back of my neck ached and I would often have a “belly ache in my neck” if that makes any sense. Looking up and left exacerbated EVERYTHING and so I learned to avoid looking that way.
Two and a half years after the trauma I started to return to driving. I would learn my inner compass was missing/broken. I was horrified to find myself LOST after taking my kids to school. In fact, I couldn’t remember how to get there….a trip I had made hundreds of times before. I used a GPS because it was like I had never been there before. Now THAT made me feel coo-koo….I didn’t understand. Then I got lost heading home. I literally ended up 20 minutes in the opposite direction because I couldn’t remember what to do or how to get where I needed. GPS became an absolute crutch. As time has gone on, I have gotten better about figuring out my routes. Often times I could think of where I needed to go…yet applying it to real life outside my head was a different reality entirely.
It is a horrific and scary feeling to feel LOST. I called my husband in tears a few times telling him I didn’t know where I was or how to get home (when phone died and I didn’t have access to GPS). Most times he would answer the phone, sometimes he didn’t hear it and I would be out there in a full blown panic. I would feel scared and the noise around me seemed to get magnified to a level that felt like it was trying to kill me. I could feel myself slipping into this dark space of isolation and I literally couldn’t think of how to fix it. I do not remember how I made it home in those elevated panic times. What I do remember is deciding I couldn’t drive yet and that I didn’t feel safe outside of my house, let alone my room. It has been a massive process to get back to driving again.
Now I am driving more often and the short local routes I do really well at. If I forget I just turn on the GPS. We purchased a charger for the vehicle so I never have to worry about my phone dying (unless the bill doesn’t get paid – GPS doesn’t work then by the way). So the phone is as important as the mortgage for me as far as financial priorities.
Buildings I have been to a lot I still get turned around in since my Trauma. Oddly enough sometimes I get lost in my own neighborhood or kids’ schools. If I survive an outing without getting lost, having a panic attack, or struggling to survive the experience – I consider that a WIN!
- Peat and Repeat Languaging – the way I communicated became annoying and complicated. I not only would have to read numerous times a sentence or a paragraph to catch it all, I would also have to listen to a voicemail like 4-5 times to get it all because remembering the number or message seemed suddenly impossible. When people would talk to me I had to have them look at me to hear them. I found myself reading lips to understand what I was hearing, or thought I was hearing.
If they turned their backs to me I would ask them to turn around and repeat what they said. Some folks are super accommodating, some act put out by this. Often times folks think you aren’t interested in listening or you do not care about what they said. It wasn’t that, I just couldn’t process what they were saying. Sometimes the words didn’t make sense. It’s like I was listening to a foreign language sometimes. Sometimes it was like I could see their mouth moving, hear noise coming out, yet couldn’t make out the words. This was maddening. Oh! if I was doing something and all my focus was on it (like typing or reading), forget about me hearing you..it just didn’t happen.
This has gotten better for me in a lot of ways through my rehabilitation journey, not better in other ways – however, I keep learning ways to cope with it despite its abounding annoyance. I am a lot better about being vocal about it though with who I am speaking to now. Once you get used to functioning at a certain level it just becomes your new normal and you accept it as what is.
- Where’s the Word?… Doh! – Okay, I have always been a talker. I started talking early as a baby and I haven’t quit since. I love words, their meanings, and expressing myself in a creative fashion. I won spelling bees in my younger years and have always been a semanticist and quite loquacious.
However after the trauma, that seemed to also have changed. I couldn’t remember how to spell basic words. I find myself misspelling things often and missing the same specific letters when I type. I would look at say……a couch. I could see the word in my head, I knew what it was, yet all I could get to come out my mouth was “that thing there that we sit on”. I have become accustomed to calling things differently than what I am thinking now or what they actually are. Sometimes I come up with some pretty creative descriptions.
- Bon Appetit No More – Food has been my friend for years. My family has always celebrated with food, rewarded with food, and used meal times as a social gathering time to express our love while being able to share something we all enjoyed….cooking, talking, and spending time together. I could always tell when I was hungry, when I was full, and when I was snacky.
After the polytrauma I seemed to lose the ability to feel hunger or fullness. For some bizarre and I am sure possibly scientific reason I lost my appetite or desire for food in general. No more interests, no more favorites, no more “cravings”, and no more enjoying the things I used to enjoy before. My sense of taste and smell had changed. Some of the things I enjoyed before now repulsed me. Smelling certain types of food cooking was enough to turn me “green” (sick). Just looking at certain types of food was repulsive. The connection with food emotionally seemed to go on vacation. In fact, if I wasn’t brought my meals in those early months and sometimes still…I just wouldn’t eat because I would just forget to eat or have no interest in it.
As time has progressed, every once in a while I go from no appetite to suddenly HANGRY (angry rage filled hunger – almost a desperate hunger); HANGRY is rare though. More often than not, I forget to eat or have no interest in eating.
I do like some textures or flavors of some things that I never liked before. My family and I equally find this as quite bizarre.
- What Temperature Is it Anyway? I remember a few specific things during my recovery process that stood out and I still wrestle with. Chronic pain I have written about in other Blog posts and will probably write about again….however what I am referring to here now is TEMPERATURE. More specifically FREEZING MY TUCHUS OFF!!! I was always cold. I couldn’t get warm, not even in the Summer months. People would be sweating and I would be freezing and covered up with my electric blanket and shaking from being so cold. I gotta tell you that being so cold that you are shaking and having multiple fractures does not a good combination make!
I have come to realize that my thyroid-pituitary-hypothalmus axis was way off. My hormones were all over the place and apparently I rattled that temperature control center of my brain pretty good.
I still have some great hurdles to overcome when controlling my comfort regarding temperature. At least now I can feel warmth eventually and not be as cold. Sometimes, I even get hot flashes occasionally and naked isn’t naked enough to cool down. More often than not though, I still get cold. Brrrrr’kin is what the kids call it.
So what temperature is it anyway? I am probably not the most reliable person to ask. You might want to check outside…..then let me know.
There are many more nuances that go along with recovering from a polytrauma and these “7 exposed mysteries” are not an exhaustive list, not even for my experiences.
However, they are some of the things that are not necessarily visible changes to anyone who isn’t experiencing them directly and I felt they were worth mentioning. If you are experiencing these things, you are not alone. What you are experiencing is real.
Hopefully, understanding that this is now your new normal will help you accept yourself as you evolve towards your plateau in search for treatment and healing.
sporting events, and Pep Rally’s are an amazing memory. As I grew into an older adult some of my music interests changed, yet I still held on to that love of music (which my parents would have probably argued on some days was noise to them). When I worked in Emergency Medicine, I love the sound of the sirens, the pager going off, the squelch on the CB or radios, the multiple directions and decisions that had to be made to save a life. I knew by their sounds whether it was “go time” or not.
people’s lips to understand what they were saying. Sometimes still I will see lips moving, know they are talking, yet understand NOTHING. I have learned to ask for repetition a lot. Sometimes I just act like I know what they said….nod….and smile. I learned little tricks, like wearing earplugs, sunglasses, carrying a blanket to cover my head with, lots of those types of things to cocoon myself from the auditory assaults of whatever environment I was in. 
A ripple effect that swirls and snatches and seeks to destroy not just the patient, but the family, the spouse, and friendships of that patient as well.
Any delayed treatments, or misdiagnoses, or haggling over care of the patient (whether by the family or the patient themselves) causes additional added stressors, which impacts the ability to heal in a timely fashion.
The financial stress will compound quickly. The person injured, if a working parent, may be unable to return to work for a period of time…if ever. This creates a massive financial dynamic shift for the whole family. If insurance is not available, or does not cover all of the medical bill this can spell financial ruin for a family. Not many individuals or families are in a financial position to endure a catastrophic injury/event. This is only compounded when the parent that is left working loses their employment because they are taking too much time off work to care for their spouse/family member. This can exponentially compound the stressors in the household.
brain inflammation or swelling. This can lead to restricted blood supply to the brain tissue and brain herniation. Tonsillar herniation is a type of cerebral herniation characterized by the inferior descent of the cerebellar tonsils below the foramen magnum. Chiari one malformation is a form of tonsillar herniation and is now known to be caused by trauma (like severe whiplash and traumatic brain injury) or in most cases “symptoms awakened” from trauma. This is an often overlooked correlation between trauma and DAI and TBI.
PTA is another good estimate for severity of a brain injury. Anytime a person has a major blow to the head he or she will not remember the injury and related events for some time afterward. People with these injuries might not recall having spoken to someone just a couple of hours ago and may repeat things they have already said. This is the period of posttraumatic amnesia. The longer the duration of amnesia, the more severe the brain damage.
Also, more intelligent people may enjoy higher processing speed or impulse conduction in brain-wires (axons). But with more complexity in the brain, the net result still could look in performances as much slower decision making resulting in a dulled sense of self, lower test scores compared with their education/experiences, and reduced overall performance compared with their performance before injury.
not own it as my own, but rather something I experienced.
may be thinking wow thanks for sharing information I didn’t need to know. Why does this matter to me as a reader? Good question!!!
I have been thinking about what to write today, January 4, 2017 for about a month now. Here I sit trying to think of how to form the words that swim in my mind and express them in a way that makes sense to anyone else but me.
ADVOCACY:
My life has been enormously eventful since my last post. There is a lot to catch you all up on. Many days have passed. I sat here staring at this screen trying to decide what to write, how to tell what I was going through, what I was feeling, thinking, experiencing. The words just weren’t there. It felt redundant and repetitive.
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.
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.
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?
HOPE TBI 