Tag: #neurofatigue

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.