Tag: #fatigue

Chronic Pain

Lady Gaga- Chronic Pain Warrior

concussedmom

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.

Chronic Pain

Is it Friday, yet?

concussedmom

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?)

It’s all a bit much, and it’s time to bring in the reinforcements. So I would like to know, what is YOUR best spoonie tips for surviving when doctor and therapy appointments are adding up?

(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!

Chronic Pain

Neurofatigue

concussedmom

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.

Chronic Pain

Sometimes, I feel like that pony…

concussedmom

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.