Sunday, January 30, 2011
Breakdown
Friday night, I was overcome with anger for the first time since my head injury in June 2009. I was so beyond frustrated and couldn't believe how I felt. My whole body was hot and shaking and I couldn't stop the tears from filling up my eyes and covering my face.
My husband was kind enough to let me have my fit without offering anything more than a hand on my arm to let me know he was there. After the anger was finished burning itself out, I immediately felt shame and sadness. It's been 19 months and there is no end in sight.
People tell me I have improved, and I know that on paper I have improved. I still feel terrible every day, though! So.... are terrible and more terrible all that different? I have been told that it is a slow recovery and could take another year or more before I'm back to the level of health I enjoyed before the injury. It's devastating to me sometimes to think further ahead than today. Even tomorrow gives me angst.
I know that God is with me. I can feel Him beside me, I can feel Him holding me. I am so grateful to have Him and I couldn't have made it this far without Him. He is everything. A friend shared this quote with me today: Sometimes God calms the raging storms. Other times He lets the storms rage and calms His child...
I hope all of you in this raging storm with me have the Lord Almighty to calm you as you go through this.
I have come to the conclusion that it's ok to break down. It's ok to get frustrated, angry, sad, and all the other 30 emotions I can feel in an hour. Job questioned The One. Others have too. God wants us to know Him, not just obey Him. I love to be able to speak to my Father and I couldn't go another day without that.
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Kate,
ReplyDeleteI wrote to you a long time ago and I have my head injury about the same time you had. (May 2009 and symptoms got worse June 2009 just like that in a minute).
I am in the same boat like you feeling terrible every single minute with constant dizziness, headache, fatigue etc., Still if I go to store I have to get out in 10 minutes or I can faint. Tried so many drugs, therapies etc., with not much progress and now started some PT for neck and stationary biking for the past 7 weeks.
Biking in the evening (for 20 mins without provoking symptoms) helps in some ways to relax, overall symptoms gets down but nothing significant. I tried the biking in the morning but not much success.
I get angry/depressed at myself why is it still this way. I can plan nothing ahead since I have no idea how bad my symptoms will be. When everyone around me talks about future plans, kids, trips, jobs etc., that makes it even worse for me since I can say nothing. It is tough to explain how we feel since they all say I look fine.
I can totally relate what you feel and as my friend suggested even if we lose hope we shouldn't lose faith.
I pray for all of us and soon we come out of this darkness.
Best,
Sam.
Sam,
ReplyDeleteI so appreciate your kind words and understanding. I feel like it's ok to get mad and frustrated as long as, like you said, we don't lose our faith. I'm so glad you are working on the controlled exercise as I am.
It IS hard to talk about the future or think about even next week or tomorrow. God says that we shouldn't plan for tomorrow, but we should live for today.
My neck PT helped a lot of my symptoms and when my herniated disc in my neck was resolved, it did improve my quality of life significantly. I hope your PT helps. It took a while for the PT to start working and helping, but once it did, it was suddenly. I felt so much better one day.
I guess I say that I used to feel really terrible every day and now I just feel terrible, but there isn't that much of a difference.
Anyway... I'm glad for your kinship through this trouble. In the grand scheme of God's eternal life, this is but a speed bump. Thank you for the encouragement Sam, I hope you have a better day today.
Blessings, Kate
Kate,
ReplyDeleteHi. I haven't written for while also. I get fustrated also and just cry. I too don't understand this thing and why it won't go away. I still feel terrible everyday. I have not had my injury as long as you and Sam and hearing your stories has me worried. I have anxiety now being out of work so long (almost 5 months). I am watching the NHL All Star Game and they are talking about concussions and PCS. Keith Primeau is talking now is 4 years out and still having symptoms.
I tried physical therapy at the beginning of January and had a total set back. Put me back to the beginning. I am now taking Cymbalta and that has helped with the migraines, anxiety and sleeping (although I still have to take a sleep aid). I have a neuro doctor appointment on Feb 8 and might talk to her about Physical Therapy. Now that I read about what your are experiencing with heart rate I understand why it may have set me back. I have tried other meds for the migraines but they tore up my stomach. My doctor keeps addressing the migraines and finally agrees that it is PCS. I have Meclazine for the dizziness but when it wears off, I feel worse.
Thanks for listening. I don't know anyone else with this condition. When I tell people what I have I get "Really?" or "I've never heard of that" or they look at me like I am making it up. I mean I don't have a sports injury or anything, I only hit my head on the bathroom door. I just want some hope that it will go away or someone to tell me that I am not crazy.
KB,
ReplyDeleteI am so sorry you are going through this. I know what you mean about people not knowing what PCS is, there is such limited awareness! It's so frustrating when people are like, “well, maybe it's this, or maybe it's that”. My mom went so far as to suggest I simply have a gluten allergy! MOM! It's PCS, I've been diagnosed.
I hope that the neurologist helps. Ask about the exercise therapy I am doing. It's not quite physical therapy. I did that for my disc herniation in my neck that I got when I fell and hit my head. Look at the research on the website: http://concussion.buffalo.edu/ and take it to your doctor.
Hang in there. I try to look at the things that God has done that have only been possible for me since I have had this head injury. I have seen major changes in my and my family's priorities for the better, we are closer and more in love with each other and Jesus since going through this. I have seen doors opened for me that would never have been without this. If I do this and take each day as it comes, I'm ok.
When I look past today, that's when I can start to spin (literally and figuratively) out of control.
With faith, hope and love,
Kate
Kate,
ReplyDeleteThanks for the tips about PT and you gave me some hope to continue. Of course I went only for 3 sessions and I felt good after 2nd session (for a day) but after the 3rd session I felt worse. My PT used the traction which made things worse. I may have to avoid that.
Your family seems to be supportive which is great. I have some friends/family members suggest things (like your Mom) which brings my anger out. One guy suggested to float on the swimming pool for my heavy-headed dizzy feeling which makes my head light. Huh!@ Unbelievable! I can totally relate what all you are saying.
kb : There is no comparison between two TBI/PCS and I want to say don't worry but with all the symptoms it is impossible to stay not worried. I know what you say about Meclazine. For me I take a low dosage Klonopin everyday but now it stopped working. Don't go near benzos (Xanax, Klonopin/Valium). It works only for short time since body get used to it and tough to quit.
Regarding therapies only Neurofeedback helped me a little. I tried HBOT, Vision therapy, Acupuncture, Vestibular therapy etc., and didn't get any benefit. Atleast it didn't make me worse. Most of these therapies insurance doesn't pay and expensive so I spent most of my savings.
All I can say we all have to keep trying different therapies and have faith.
Best,
Sam.
I wish I knew where you got your strength from. I have been dealing with PCS for about 7 months. Everyday is such a struggle and if I didn't have my kids it would be hard to keep pushing myslef. I feel a little lost my doctors only words of help are you will get better, but other than medications and a neuropsychological evaluation nothing for me has really been done. I think that is the most frustrating part, feeling like there is no one around that understands. Do you know if the majority of people with PCS still work? Everyday at work is a struggle for me and I have already moved to part time. My neurologist just tells me to come back in 6 months and my family doctor basicly said to suck it up becuase he believes in mind over matter. It would be nice to see a doctor that would be more supportive. Well thanks for listening.
ReplyDeleteKelly,
ReplyDeleteWe all in the same boat with PCS and struggle everyday/every minute. Most of the Neurologists don't have a clue about PCS and all they can give are anti-depressants, migraine medicine which may treat the symptoms.
I went to work immediately after head injury and worked for 5 weeks and totally went down one day just like that.
After that I couldn't work for about 11 months and now for the past 9 I do some work from home in Computer of course whenever I can (thanks to my great Manager who knows PCS more than doctors and gave me some purpose in life and saved/saving me). Going to office ruled out for now with all the symptoms.
Ideal thing is not to work until you recover but many cannot afford to do that and push it through. If I have enough money I will completely focus on my recovery trying all the alternative therapies out there and then go to work gradually.
There are some doctors who are supportive but tough to find. Neuro-psychologists I heard are very good but very expensive I think.
Good luck.
Hi Sam,
ReplyDeleteNo problem – I think PT is something that takes a while and can get worse before it can get better. I used to say during traction “it hurts so good”. I'm sorry your family isn't so supportive. It's hard when people don't really understand and don't take the time to learn.
I'm glad you can work from home and be productive in that way. I hope things continue to work for you.
Thanks, Kate
Kelley,
ReplyDeleteMy only strength comes from God. I have seen positive things happen in my life through this time that I've been sick. Taking each day as it comes is important. When I start thinking about the future, things become very disappointing very fast.
The general consensus for PCS is that rest and low dose anti-depressants are the only thing that can treat it. Research studies in exercise therapy are very new and not approved methods yet. It's really frustrating that there is no diagnosis or treatment, and most of all, no awareness!
I am sorry you feel discouraged and alone. You aren't alone! I think like Sam said, if you can take time off work, your symptoms will be less. I am fortunate enough that my family can make the bills without my income, so I stopped working a week after my injury. I applied for Social Security Disability in November 2009, and I just got a hearing date in the mail yesterday. The final decision will be made April 11. I was denied at first and appealed with a lawyer. Hopefully I will be approved and it will help my family pay off some debt.
What area do you live in? Maybe we can help you find a neurologist who knows more about PCS and maybe there is a research study in your area you can be a part of. I'm in Western New York and that's where Dr. Leddy is located.
Keep your chin up and no matter what others may tell you, what you have is real and you are not going to be able to “tough it out” or “mind over matter”. You have a brain injury and it will take time to heal. Therapies may be able to speed it up, but no one knows much about it.
With faith, hope, and love,
Kate
Hi Kate,
ReplyDeleteI meant to write back sooner but I have had a few bad days (which of course my family does not understand and are now questioning me as if I am faking or not doing everything that I can, my mom has even gone so far as to ask me why I hit my head so hard, like I did it on purpose). I did go to PT and it was specialized for vertigo. I had to find a therapist certified in this particular area. She put me on the treadmill at the end of the session and I became so dizzy after about a minute I had to stop. I will try this path again later.
I am trying to stay positive but it's getting hard. I have an interview with Social Security tomorrow and have no faith that I will get benefits. At this point I am hoping to get long-term benefits through work.
I have to go now, the computer is starting to hurt my eyes.
Talk later.
KB, I'm sorry again about your family. I hope that you can stay strong and faithful and get through all this. I think it's hard to understand how someone who is so strong and active can suddenly be like we are. With so little knowledge and awareness about PCS, we are all hit with a stigma of "faking" or "embellishing". There is so much that doctors don't know about the brain and concussions.
ReplyDeleteHave you continued with the Vestibular therapy? I have a VNG test (http://www.ndxlabs.com/vngPI.php) scheduled for Friday that is supposed to nail down where my vertigo is coming from. I may go to vestibular therapy after if it's a "crystal" issue.
I know it seems like a long and daunting battle (and it is), but you can do it! Stay positive, because even in the darkness, God's light can be seen. It's ok to be mad and frustrated and sad, but know that you are loved and you will be held all the way through this.
Social Security is a nightmare and a difficult process. I just got my hearing last week. I applied in November 2009, was rejected in March 2010, and my hearing date for the appeal is April 2011. They almost always automatically deny the first application and make you appeal. Don't get down if you get rejected at first. I got a lawyer to handle the appeal. They only get paid if my case is won, and they don't take much.
With faith, hope, and love,
Kate