I recently contributed to a blog post about Chronic illness and isolation.
I think that many of my #spoonie readers will relate.
Silent Symptoms of Chronic Illness – Loneliness and Isolation
— Read on despitepain.com/2019/03/03/silent-symptoms-of-chronic-illness-loneliness-and-isolation/
IT all happened without me even realizing it was happening. I had just dropped my girls off at daycare, and I was sitting at a cross intersestion, waiting to make a left turn my school. I was watching the traffic pattern- trying to anticipate when it would be my turn to edge ahead. There was a pick up truck directly in front of me. He had his turn signal on- as I did- we were both turning left.
And then, the flash happened. I didn’t see it coming, nor did a I realize, at first, how significant that moment would be in my life. In a flash, my and my familiy’s life changed.
A distracted driver ran right jnto the back of my minivan- causing my full travel mug to be tossed across my front seat. Likewise, it caused my head and neck to be tossed forward and back, two times over. My brain bounced within my skull and my neck was strained beyond its capacity, and with these injuries, my life was forever changed.
It can happen to anyone- and it can happen in a flash- so embrace each moment for all that it is worth- you never know if it could be the end of the old, and the start of your new life.
Be aware, and don’t believe The Myth of Mild Concussion.
While I did not watch most of last night’s Oscars, I DID make sure to see Lady Gaga and Bradley Cooper’s performance of “Shallow” from “A Star is Born,” and all I can say is “Wow!”
I must admit, I wasn’t a huge Gaga fan when she first hit the scene. I was too distracted by the sometimes odd nature of her performances to really focus on her songs. I did, however, always appreciate how she went out of her way to make her fans, especially the marginalized and sometimes ostracized, feel loved and accepted.
I began to pay more attention to Gaga when news of her Fibromyalgia diagnosis became news. Always looking for inspirational stories, I made sure to watch her documentary, Lady Gaga, Five Foot Two when it was released. I found it VERY real, and unfortunately, relatable. The will to push herself past her limits, and then the boomerang effect that would have her curled in the fetal position, longing for relief- all of that resonated with me, as I am sure it would with many chronic pain sufferers. While Gaga’s life is obviously very privileged- she can afford full time assistance to help her manage pain and everyday life- it still struck a chord within me to see her raw pain. I feel like I can understand the very real place that she is coming from when she performs- both on stage and in the movies. This understanding of Lady Gaga’s life made watching A Star is Born even more emotional for me- and I don’t think many of the Oscar watchers will soon forget her performance of In The Shallows anytime soon. So if you have an hour or two to spare, take the time to see watch Ms. Gaga’s story and you will see how a real star is born.
It is currently lunch time on Wednesday, and when I add it up, I have spent approx. 9 hours in doctors’ offices, and 3 hours at the dentist so far this week. To be fair, 2 hours of the doctor visits were for my oldest daughter, and the dentist was for my youngest daughter, but I am still one tired momma.
When you throw in “normal” everyday activities like showering, dressing, food prep and consumption, I feel like I have used up all of my spoons very early in the week. So for the rest of today- or at least for the next few hours, this is my view- 
(Notice the ears of my always faithful, comforter in chief.❤️)
To summarize the result of my appointments, I have to consult with a pulmonologist because a sleep study showed that I am losing oxygenation when I sleep (not like apnea when you stop breathing). My rheumatologist also suspects an auto-immune response in my body- though she hasn’t pinpointed what, yet. My bloodwork is negative, and she suspects seronegative arthritis, a form of rheumatoid arthritis. This is all a bit nerve-wracking to me as my mother passed from auto-immune disorders three years ago. Knowing that the brain injuries can lead to disruptions in ALL areas of the body, I have legitimate reason to be concerned.
I am also being referred to a OMT Physical Medicine and Rehab doctor to treat me for allodynia and other pain issues. The lucky part of that is the doctors I was referred to are former co-residents with my CURRENT PMMR doctor that I see for concussion management– but I have to be honest, it’s completely overwhelming to think of adding two more doctors to my mix- not to mention that the therapy docs are 45 min away. I am already going to one medical massage per week and one-two physical therapy sessions- along with whatever other appointments come my way. It would be overwhelming for a person with a healthy brain and body to navigate this all, but for a spoonie like me, it feels like I am standing in front of a mountain that I need to climb, and the terrain goes straight up the face. 
My head is spinning, and I am employing all of my “just do the next, right thing” beliefs, ala Glennon Doyle, and that is the only thing making it possible for me to crawl out of my bed each day. I WANT to spend my time and energy anywhere but in the doctor’s office or on my couch, but that seems to be my path for the next few weeks, at least. (Did I mention that my daughter ALSO has to have PT twice a week for a shoulder injury?)
(Bonus points if they don’t cost a lot of money- it’s easy to outsource cleaning, laundry and meals when money isn’t an object, but when facing some high out of pocket expenses, that has to be factored in, as well.)
I hope to have enough energy to finish my post about vestibular therapy, soon- so be on the lookout!
I had planned on writing at least one post about the therapies I have tried within the past 7 years- but my body has had other plans. 
I have had a pretty sudden, severe onset of nerve pain on the right side of my upper body. It is excruciating at times- deep throbbing from my shoulder to my hands- combined with numbness and tingling throughout my right hand. Combine that with at least 2-3 appts per week for either doctor visits, PT, or medical massages- there hasn’t been a lot left in me to think about writing.
But that’s okay. My number one priority in this life is my family- and taking care of myself is an important part of caring for my family. I can not live with pain like this- it doesn’t allow me to help around the house or do much of anything. So, my focus right now is figuring out what is going on in my neck- and how to fix it. I have an MRI on Monday, so once the results are in, we will determine next steps.
So for now, I am thankful for my heating pads, ice packs, and most importantly, my wonderful, supportive husband. ❤️
The thing about learning how to blog- and trying to organize all of my thoughts is that it is very tiring. So while I may have a series of ideas bouncing about in my head, and maybe some snappy one-liners cued up, I have to figure out a way to pace myself so as to not do harm.
Everyone gets tired. People may even use the expression “brain dead” to describe themselves after a particularly tough day. Neurofatigue after brain injury is totally different. In fact, I would relate my Neurofatigue to going “All In” in a game of poker with one pair. Unless there is some random stroke of luck, there is nothing left.
In the early years of my accident, I would often “feel” my brain trying to work. I would describe it best as I would get a “flopping” sensation in the front of my brain- one that I would liken to a goldfish who had somehow fallen out of its bowl. My brain was flopping and twisting for its life. Today, this sensation happens a lot less, (Thank God!), but it is still brought on when I work too hard on matters of perception (such as puzzles) or when I am trying to synthesize too much information from too many sources. As a result, as I flip back and forth through WordPress guides and tutorials in order to learn how to make my hyperlinks work, or how to allow followers to know how to contact me, and also write, it can be a challenge.
So while I have a LOT to say about brain injuries, chronic pain, migraines and the like- it may take a bit in between posts. I hope to continue to reach other #warriors and remind myself, and them, that someone DOES understand.
Some days, I feel like I only have one “trick” up my sleeve, and today is one of them. Perhaps it is because I did “too much” yesterday. I had a physical therapy session for myself, and then had to pick my daughter up early from school for her own PT session. I then went out with my family for a quick bite, returned home to help with a homework assignment, and dissected the plot of a television show with my oldest daughter. Oh, and then I had to shower and blow my hair half- dry before turning in to bed. These are all mundane tasks for the healthy person, but maybe that was all too much for one, mid-winter day. I never know the answer.
Today, I had to awaken an hour earlier than usual to take my youngest daughter in for some dental work. (Anytime my sleep is thrown off in the slightest, I can pay the price for days after). Whatever the reason is, today, I feel like I have accomplished all that I can for the day. And that is a difficult pill for me to swallow. As I lounge on my couch, huddled in a blanket to try and keep warm, I stare aimlessly at the tv, or social media- because I know that reading a book would be too taxing for my brain. I look at my family room that needs redecorated after taking all of our cozy Christmas decorations down, and I wish I had the energy to Pinterest -up some projects around my house. I try not to think of the ever-growing mound of laundry upstairs, and I take mental inventory of what we have in the refrigerator to try and determine an easy dinner to make. I do this all while keeping a watchful eye on the clock for when my girls will be home from school- because each day, I paste a smile on my face and greet my kids with whatever energy remains within me. On days like today, maybe that should count as my second trick– assisting with homework, the daily run-down, and extra-curricular activities– they all take energy that most people don’t ever have to think about. But, I do- and sometimes, it can be tricky.
How do I determine when to push ahead, and when to listen to my body and rest? These are questions that I struggle with daily. Each morning, I wake up not feeling refreshed. I put one foot in front of the other and rely on the scientific theory, “An object in motion will stay in motion.” I rely on this mantra as I push through the initial fog, reach for my medicine, and begin to fuel my body for the day.
After the hustle and bustle of getting the kids out of the door for school; I take time to assess my body and brain for how they are feeling each day. What hurts most today? (Unfortunately, for the past 7 + years, it has never been ‘Does anything hurt?’) I also need to assess how alert I am. Am I following conversations well, or am I feeling confused? Is there any part of me that needs to be addressed before I can start my day? Sometimes, my medicine will kick in and I feel more alert and capable after a half hour or so. Other days, I feel like my energy and focus are nowhere to be found. It can be incredibly random and therefore difficult to predict- all which can lead to more frustration if I let it. With it’s myriad of symptoms, there is no getting around it, living with Post Concussion Syndrome (PCS) is challenging.
I check my schedule for the day to see if there are any appointments or errands that I must attend to, and if not, I typically take that time to sit on my couch, peruse social media, and flip between Good Morning America and the Today show as I continue to take inventory of myself.
Some days, I have non-negotiable appointments set up- and they can be both good and bad for me. When I have to be out of the house, I typically get ready and go- no matter how I am feeling- and I deal with the consequences later. Doctor’s appointments and physical therapies can be both motivating and exhausting at the same time. I rely on adrenaline to see me through, and I crash when I get home. Those days, I get frustrated because I feel like I have spent all of my “good energy” addressing my health and not doing anything fun or fulfilling- but I also can find solace in the fact that I have ticked concrete items off of my to-do list, therefore “earning” the exhaustion I feel. The equation is balanced in that occasion. Other days, I may not have anything concrete on my schedule, only a list of tasks I would like to accomplish or things that I “should” do. These days can be trickier to navigate because logically, I know that my body DOES need more rest, so how do I balance what I would like to accomplish and what I should do? How can I tell what would be best for me in the long run- to push or to rest? Seven plus years into this journey, I still struggle daily with how to answer that question. Sometimes, I even wonder if someone should be making that decision FOR me because it feels like too often, I have a tough time finding balance between the person I desire to be and the person I now am- and I still have a very difficult time accepting that fact. One day, I hope to be able to accept myself as I currently am, not who I was.
What’s the one party that no one wants to be invited to? Yup, that’s right. A pity party. When I share about concussions, my spine injuries, or even migraines, its with the intent to further understanding. True, I want people to understand what I face on a daily basis, but I don’t want pity. I want empathy and understanding. I want people to know that when I am hesitant to make plans, or have to cancel at the last minute due to not feeling well, well, I want them to know it’s the truth and it’s not something I take lightly.
On the flipside, I also want family and friends to recognize that when I DO show up, when I DO accomplish a mundane task like cooking a full meal, attending a friend’s party, or even washing and folding a basket of laundry, it IS a really BIG deal. Those tasks can be momentous for me on any given day- and more often than I would like, they are out of reach. Think about that. I know no one WANTS to do laundry, and we certainly bemoan the constant question of “What’s for dinner?” But what if you just couldn’t manage those tasks on a regular basis? What if you had to face your husband, day after day after a full day of work and school, and admit that dinner wasn’t something you had enough energy left to accomplish. That would frustrate all parties involved.
The constant challenge for people with chronic illness to complete the mundane tasks of everyday life is not one that too many people recognize unless they have experienced it themselves. Think of how it feels the first week or two after having the flu- how everything is exhausting and takes so.much.extra.energy. Even showering. That is what it feels like on a regular basis to live with chronic illnesses.
So while I don’t need a parade in my honor when I DO show up at a school event or a party; I DO want people to recognize how much harder it was for me to accomplish the same tasks that so many take for granted. And ultimately, I want that understanding to motivate others to appreciate their own lives.
The Concussion Chronicles 