It's hard for me to hear people say things like “It's not as bad as what you are going through, but...” and then proceed to complain about something that is going on in their life. It's hard for me to hear this, because I truly believe it's all relative. We all have our own thing.
A good friend inspired me to be honest: I get angry, frustrated, jealous, sad... so terribly sad. I feel sorry for myself. I wallow. When someone feels better after being sick or injured, I ask, “Why not me, when is my turn?” I am petulant and impatient. I take on too much and then fail miserably.
I am so scared that I might be this way forever. This might be my thing for the rest of my life. I might hit the end of my life and not ever get to feel well again. I have forgotten what it is like to feel good.
The emotions I have experienced while being disabled have ranged from low lows to high highs. I get really discouraged, but I also feel tremendous joy. Sometimes I feel like I'm in a waiting room, ready to hear my name called.
I have watched people get hurt or sick only to be fully healed and whole in a matter of days, weeks, or months. To those people who have been hurt or sick, a week might feel like forever. For me, it seems like the blink of an eye. I've been disabled with this head injury for 2 years, 9 months, and 15 days. For me, it has seemed like forever, but for someone who has been living with a sickness or disability for longer, my struggle is a fleeting moment.
There are people with all ranges of TBI. For me, I can function pretty well. My only limitation is how much pain I can handle. The more I do, the more I hurt. My thinking and processing is slower than it used to be, but I was relatively high functioning before the head injury. Some of my processes feel like they have never even been affected. I can handle physical activity in small doses, social activity in small doses, I can read and write, I can remember pretty well as long as I'm not too overextended. I have limits, but I'm not stopped in my tracks.
I'm so blessed with a support system that loves me and tries their best to help me through this. My husband and children have stuck by me through every moment and fought this with me. I'm loved by the King of Kings, my God, who has never let me go or let me fall too deeply into despair.
I'm a fighter, I will not give up trying new treatments or seeing new doctors until all avenues have been explored, I die, or I am healed and whole. The Spirit inside me will not let up or give up.
Oh! Kate. I feel your pain. I hope you feel better. I am having a bad day. Nerves are pushed to the limit today. I went to see a nutritionist today and it was a little too much. It was an hour long appointment. I just kept nodding my head. Ugh. I felt like saying "could you just write it all down and my husband can figure it out?" But I know I have to do this on my own. I have to get this weight off, I think it is making me feel worse. I get fustrated when people tell me other peoples concussion stories as if mine isn't as bad as their friend's or relative's. Of course the nutritionist had to tell me her friend's story. Of course she smashed her head on a volleyball court and heal quickly. And here I am with my stupid injury and it's been 1 1/2 years and I still feel horrible. My poor husband came home and I just burst into tears. He is so supportive. I am glad you have a great support system too. Hope your day got a little better. :)
ReplyDeleteI know exactly what you are feeling... It will be 3 years for me on March 25.. I pray that all of us suffering with this will receive complete healing.
ReplyDeleteHi Kate ! I am so sorry you have to live with this crap! me too honey its been 2 and half years now! just saw my useless neurologist who discharged me with the suggestion it was just the court case preventing me from progressing! Ba*tard! any way I am seeing a psychiatrist who i think will prove to be alot more useful than my neuro! He thinks i have adult ADD/ADHD and this is compounding my problems and exaserbating my anxiety ! i cant wait to start my treatment! i know it wont cure my PCS though! I think on a possitive note that healing does happen but more like over geological time periods haha! and its rehabilitation not recovery! I wish you the best in your quest!
ReplyDeleteP.S have you tried hyperbaric oxygen therapy?
Hi Kate,
ReplyDeleteI've just spent an hour going over your blog. My husband got a concussion three months ago while playing hockey and he is forever worried that he will suffer forever with his symptoms - and he has many. I research all the time on how we might be able to find help for him and I recently just discovered the UB clinic. I doubt they will see us since we are from Canada so I am trying to figure out their system. Start on treadmill and increase intensity every minute until you feel symptoms then check your heart rate. Walk on treadmill at 80% of that heart rate until you feel symptoms, readjust after three weeks. Does that sound right? How much did this help you in the end.
I'll pray for you and hope you get some real relief soon. As a parent, I know how hard my husband has struggled not being 100% around our kids. I feel greatly for you as a mom.
JJ
Jane,
ReplyDeleteMy daughter ( she is 20 now) had a concussion 3 years ago and never got better. I was not willing to accept that. 5 neurologist and every test, she is better. We are in the process of writing a book because what we found is so important. When a female gets a concussion 1 in 5 damages their pituitary gland. Most heal but many do not. Dr. Urban dean of University of Texas endocrinology did the study and is verifying the results now with soldiers-same results. It is not neurological but endo. issue. Have your doctor do a stimulation test. This is not detected on a regular blood test-my daughter had over 50 blood test non showed pituitary issue. She has been on hgh shots for 13 months. It takes 12-14 months to reach normal levels and then her body will start to heal. It is a slow recovery but she is 1000% better than were she was. you are welcome to contact me should you have any questions.
I feel the same way. Came over your blog when I was laying in my bed "feeling sorry for myself" and thinking it will never go away! I just want to get well! If I only knew that SOME day I would be fine it would be easier to handle. Take care, hope you all feel better soon!
ReplyDeletehi, my son had a 30 foot free fall from indoor rock climbing. i do not know who to turn to. he was a honor student,perfect attendance, goals. his head was not looked at when he fell, as he had neck and back and arm injuries that they focussed on. however since then he has had memory, shaking of legs and arms, all that got worse after anesthesia. his school grades and attendance, memory, and behavior are now much worse. each year since 2008, he has gotten worse. now his behavior is as though he has a short circut in his neuro, but yet we do not have any medical direction to get him the help he needs. he is 17, and we are very concerned for him. i wish i knew of others that have had this happen, and a top notch neuro doctor who could help dx and treat him even though it has been a couple years since his fall. i am writting here, as i dont even know really how to blog or where to. im just starting to reach out and hope people will read this to help me. thanks
ReplyDeletePCS Mommy,
ReplyDeleteThanks for the response. Sorry it's been so long since I've written we had a whirlwind of a month. It's so hard to take in new things when we aren't in a rested mind-state. My husband sent me an article to read and he tried so hard to understand why I just couldn't read it right then. Sometimes my brain just bucks against new information. I try to make sure I never go to any appointments alone, because it is rare that I would ever remember most of the information. Sorry you had a bad day!!!
-Kate
Anon.,
ReplyDeleteI'm sorry you had to “celebrate” a 3 year anniversary of this! I pray the God of wonders will heal your brain!
-Kate
Jesse,
ReplyDeleteI'm sorry you have a neurologist who isn't understanding. I've been seeing a counselor for a while now and it has proved to be helpful. She listens to me and can see my whole body health rather than just being focused on one part. How has it gone seeing the Psychiatrist? You are right, it is rehabilitation and not recovery! We have to find the parts that our brain injuries messed up and try to fix them piece by piece. Hang in there.
-Kate
Jesse - I never tried Hyperbaric Oxygen Therapy. Have you?
ReplyDeleteJJ,
ReplyDeleteSo sorry to hear about your husband. That's terrible! Sorry it's taken me so long to respond. Be careful when trying this treadmill therapy. I'm not a doctor and cannot give you a treatment plan. I was tested first to find out what my threshold levels were. I was put on a treadmill and given CO2 and they continued to raise the incline until I couldn't continue. They used that as my baseline time and heart rate and then asked me to exercise at 80% of that. I'm not sure if you could figure out what his baseline is, so if you are going to do this, just start slow.
Any exercise is good for the body as long as he stays symptom free. He should keep it low impact also. I don't know how much it helped me as I'm still experiencing so many of my symptoms. Dr. Leddy is very smart and thoughtful and the treadmill test is only approved to diagnose PCS, not to treat it. He has seen success in doing the test.
He released me from his care, saying he couldn't do more for me at this time, but I could come see him for advice or consults on my treatment. He's really a great doctor, but I didn't get better.
Good luck! Keep trying things and doing research.
-Kate
Sissy,
ReplyDeleteThanks for this information! I looked up the doctor's name and pulled some articles on his research. I haven't had time to look at them yet, but I'm planning on pursuing this. I'm glad that your daughter is better. That's such great news! I'll look for an endocrinologist in my area and bring this up.
Thanks!
Kate
Anon,
ReplyDeleteThanks for the post. I'm sorry you are having a hard time with this. I have been seeing a counselor and it's helping me deal with some of the feelings I have. Others in our lives can be supportive, but can never really understand. The counselor I see specializes in patients who are rehabilitating from different issues and is in a wheelchair herself. It is good to feel heard and understood. Hang in there! I hope you feel better soon too!
-Kate
Anon,
ReplyDeleteI'm so sorry about your son! I can't imagine having to watch my children go through this. I pray that God will comfort you and give you the strength and endurance you need to continue to go through this. Four years is such a long time! What area are you in? If you are on Facebook, there is a group on it that has concussed people from all over. They might be able to help you find a good doctor who will direct you. http://www.facebook.com/groups/113072042059485/
Hang in there!
Kate
I got a concussion last Thursday and I am feeling horrible. The doc said I will have symptoms for 4 to 6 weeks . Are you guys talking about the same thing. That is scary for me. I can't quite function normally at all. I tried to exercise today and my head is numb dissy feeling? it was on my treadmill.
ReplyDeleteHi Peggy,
ReplyDeleteI'm sorry you had a concussion and aren't doing well. I'm hoping that you will recover in 4-6 weeks as most people do. Some, such as myself, do not recover so quickly.
Make sure you really do what you are supposed to and rest your brain. Maybe don't get on the treadmill until you are healed? You should consult your doctor before you do any exercise.
Good luck to you and as I said, I hope you recover in no time!