I don't know what's wrong with me lately, but I've been feeling so tired, listless and depressed. My body, mind and spirit are all in sync, but not in a good way. My concentration is worse than ever, I'm taking two naps a day, and I'm frequently frustrated to the point of tears.
My night sweats haven't stopped, and the pain behind my eyes and my visual disturbances are troubling me to the point of distraction.
I've had so many tests done, so much blood and fluid taken out of me, and so many injections in the last six weeks, I can't help but wonder if my body is just retaliating.
To add insult to injury, I have what seems to me like a giant dent in my forehead that just appeared out of the blue about two weeks ago with no explanation. Two neurologists have looked at it and have no idea what it is or why it's there.
Going into my 15th month as a brain injury survivor this is all very baffling. I thought I was supposed to be getting better with time. Right now I feel worse.
As for the reasons I'm feeling this way, well, the possibilities seem endless. That's what all the testing has been for, but so far nothing has been conclusive. The good news is I've been tested for just about every illness under the sun and - other than this damn traumatic brain injury - I'm "healthy."
But how can I be "healthy" when I have a chronic illness with symptoms that go undiagnosed?
After all, traumatic brain injuries are a chronic illness. This will never go away for me. Some symptoms may improve over time, others will linger. More often than not - until research of the brain and brain injuries gets better - there will be no answer or solution to many of my problems. They'll be like the dent in my forehead: an enigma even to the best doctors.
Maybe it's this reality that is making me feel depressed lately. After all, hypothetically, I shouldn't be depressed since I'm on medication for that. And perhaps all the treatments and tests done in such a short period of time have just sapped my energy. On the other hand, it appears that I still need more tests to get to the root of the problem. Classic chicken and the egg scenario.
One thing that keeps coming up as a solution to all my problems is more exercise. I realize logically that exercise can increase endorphins and that studies show it's helpful in regenerating brain cells, but how am I supposed to exercise when all I want to do is sleep more?
About eight months ago, when my insurance would no longer cover my vestibular therapy for my balance, coordination and vertigo issues, I signed up for a belly dancing class at the local rec center. I do this once a week and I love it. My instructor knows all about my TBI and challenges and has been wonderful with me. But there are nights like tonight that my body screamed "No!" to much movement, so I didn't go. I know I have to listen to my body, but then I feel guilty and lazy, especially when everyone is telling me to get MORE exercise.
I'm not giving up on myself physically. Far from it. I just took delivery of a new three-wheel bicycle ("adult trike") yesterday, so my husband and I can go on rides together in the trails near our house without worrying about me falling off a traditional two-wheeler and sustaining another TBI. I'm really excited to use it once it's assembled. I just hope I can get over this lethargy and get out there.
After all, I'm "healthy," right? So what's stopping me? Just this little thing called a TBI and its nasty symptoms that no one can explain and I seem helpless at times to successfully fight against.
I have to remember that all along my so-called recovery has gone in stages. Sometimes I'm up. Sometimes I'm down. Right now I just happen to be way down. Hopefully, this will pass and I will move on to whatever is next.
Right now, though, all I can think about is how much I would love to be a kid again and have all the energy I had then. I want to run, bike, climb and play - all without fear of hurting myself. I want to have that feeling where I hated when my Mom called me inside because it was getting dark outside and I needed to come indoors, or when the idea of taking a nap or having to go to bed was dreadful.
I don't want to feel like at the age of 36 I am tired, lethargic, and faced with a life ahead of me full of chronic pain and mysterious and troubling symptoms.
I will get past this. I just want to get past it now. Patience is not one of my virtues.
Tori, I love you!!! I know it is so hard and frustrating. I am only 2 months ahead of you in this healing journey we are on. Ups and downs and all arounds. I hope something can be figured out for you!!!
ReplyDeleteThank you, Wonder Woman! You're an angel!
ReplyDeleteTori, I feel ya! I really can relate. Recovering from my brain injury was incredibly slow. At times, it seemed as if I was in a film going in slow motion.
ReplyDeleteOne way I found to deal with it and frame it positively is I learned to look at each "setback" as a challenge as a big signal that showed me exactly where I needed to work. Instead of looking at them as deficits...even though they are...see them as big flashing arrows showing you what is next on the path of your recovery.
Accept them. You are tired. You feel like shit. That is the reality right now. That is OK. Allow yourself to feel like shit. Quit pushing yourself and give in to it. If you have to take 2 naps a day, that is not good or bad, it is what it is. The good or the bad is in your perception of it. How you view it in your mind. That is totally within your control.
I had to take multiple naps a day and still do oftentimes. It is what allows my brain to function and allows me to get through the day and to be productive at all when I can. In that regard it is good.
I would encourage you not to see this as a "chronic illness" and not to define yourself by it. When you do this, you are creating that reality for yourself. Yes, it is a huge, part of your daily reality, but only part of it and only part of who you are. It is not who you are not does it have to define your future. It is a mental choice regardless of the physical realities. Blessings.
Such great comments, Debbie. Thank you! xoxo
ReplyDeleteTori..I have a son that was in a car accident, fractured skull and in a coma for months. He survived but was left blind and disabled. He is my inspiration on focusing on reality....Hang in there and be strong. Stubborness does help..LOL
ReplyDeleteMarsha MtCastle
Thank you, Marsha, for sharing that with me. All my best to you and your son. You are wonderful people.
ReplyDeleteTori, I feel your pain and frustration. We learn as we go on, the brain is a mystery. Every injury has different symptoms. I had my accident in 2007. I thought my skull fracture was like a bruise, it would heal like a broken arm and I would be fine. The doctors sat me down and told me the real deal. The first 2 years seemed the hardest. My doctor told me it was still considered a new injury. He told me 5 years will show most of the improvement we can expect. It isn't that way for everyone.
ReplyDeleteI also went for vestibular rehab for extreme dizzy spells. It was a tremendous help. My confusion and thinking of more then one thing at a times was impossible. I was put on seizure medication before I had surgery. I had great results with the medication. It makes me think clearly and has been a major part of helping me function. I already feel a bond with you and this page. Thank you and stay strong.
Joann, there is a bond with those who have also gone through a TBI. Five years tells the whole story? I never knew that! I was told that the changing of my brain after my head injury was called the 'cascading effect'. He said that the chemicals in the brain change after a brain injury. All I know is I gradually got worse the first couple of years. It's been almost 9 years now, and I am still being fixed - I"m the second Humpty Dumpty ... all the king's horses and men could put Humpty back together again.
DeleteI had to have balance therapy afterwards ... that was interesting! and hard.
Thank YOU, Joanne! I'm glad we found one another.
ReplyDeleteBest,
Tori
Did you also lose your smell and taste?
ReplyDeleteYes, Joanne. The doctors think I severed - or at least severely damaged - my olfactory nerve in the fall.
ReplyDeletewen yu r feling fed up that is wen yu hav to kep yor hed up and stay prayd up and nevr giv up
ReplyDeletei wad hit by drunk drivr 3 yeers ago on my motorsycl and as wel as 2 hips replasd.. lung gon.. and legaly blind .. 2 hemorag stroks..now i also hav tbi...i wil no evr retern to be psycologist agan but I AM ALIV!!
kep yor hed up tori,,i saw yor pag on fb
Thank you, Karen. You are an inspiration!
ReplyDeleteKaren, I remember going through the first couple years after my TBI (rearended in my auto). The first docs that tested me, said, "yes, you have a TBI, but you'll be all better in 9 months". I was getting worse. One year came and I was really down b/c I WASN'T better. I was gradually getting worse. Seizures started about a year after and they progressed to my having a grand mal.
ReplyDeleteThen the second anniversary of the accident, it really hit hard, when I realized this is my new life. I told my counselor that I should hold a memorial to the old me, so maybe the people in my life would accept this new me and still love me.
God speed