Originally Posted by lxxl

I’ve been wanting to post to this thread in the hope that it may provide some comfort and help to those recovering, especially those who are at the beginning of their journey.

My backstory: I’m a 48 year old male. In July of this year I was in a mountain biking accident where I was thrown into a tree head first at close to 20 miles per hour. The other part of my story is that this was my 9th head injury. This time around, however, things have not been easy.

Most of you already understand the suffering related to the multitude of physical symptoms, the fear, the loneliness, as well as the unforgiving psychological effects of this injury. I feel no need to narrate that part of my experience. Besides, I understand that there really are no words that can completely capture what you’re going through.

Instead, I want to simply say that I’ve made great strides since my accident, that I’m starting to put my life back together, and that I expect to eventually get back to a point where I feel healthy. In short, I can attest that there is hope.

But I want to do more than that. I also want to describe some of the things that helped me and relate a little of what I have learned during this process. Understand that much of what follows is not anything new. In fact, I echo many of the voices that have contributed to this forum. But, there is a little of me rubbed on what follows, a little of my therapist, as well as a small contribution from my neurologist. I hope you find it beneficial.

1) Read the sticky thread “Things you wish you’d known when you first got post-concussion syndrome” in this forum. It took me almost a week to get through the thread due to my initial fatigue, migraines, and light sensitivity but it was worth it. The discussion got my recovery off to a good start and helped me understand what I was facing.

2) Keep a journal of your physical and psychological symptoms. This is something you’ll be advised to do repeatedly. Heed the advice. You’ll need it to accurately discuss what you are going through with the health care professionals in your life. But more importantly, your journal will allow you to track the improvements in your condition however small they may be.

3) Pay special attention to your physical and psychological symptoms. They are the best indication of what’s going on for you. If something makes you feel better, such as meditation or a hot shower, do it as much as you can. If something causes any of your symptoms to get worse avoid it if possible. It’s that simple.

4) Do an accounting of your assets. I don’t mean money or anything of that ilk. I mean things like your family, your life partner, your pets, your plants, your creativity, your strength, your drive, your will to heal. Anything that brings you joy, is sustaining, and is life affirming. Keep them close, don’t forget about them, and engage them as much as you are able. You’ll need them more than ever.

5) Do not put a time limit on healing. This is different for everyone and for some it takes a while. I remember the despair I felt when it was a month, then two, then three with little or no improvement. It took three and a half months before I started to see significant changes in my condition. Do not lose faith in your body’s ability to heal. The majority of people do get better. It’s just that this is an injury unlike anything you’ve ever experienced it probably won’t conform to anyone’s expectations.

6) Learn mindful meditation. At first, when I couldn’t sleep, this was the only form of rest I got. Later, it was something that I did to help with the headaches and tinnitus. When I felt a headache coming on or the incessant ringing in my ears got worse, I’d stop and meditate. This practice helped ease (not eliminate) the worst of the physical symptoms.

7) Sleep as much as you can. Everyone will tell you about the importance of rest and reducing stress and they are right. I can only add there isn’t any substitute. Sleep is your first battle. Drugs didn’t help me, the only thing that did was meditation. That said, it was about three weeks before I could sleep for more that 2-3 hours at a time. (This is by far most pernicious part of the injury.) Also, keep in mind that after you can sleep, you going to need a lot more than you did previously. Plan on it. I went from being someone who needed 6 hours to function well to someone who needs 10 to feel okay, 12 to feel good, and 16 when I pushed a little too hard. Sleep as much and whenever you can. It’s the single most helpful thing you can do.

8) Stay positive. There is a good chance you will have to be stronger than you ever have been in your life. But I’m surviving this, others have survived it, and you can too. Hang in there, things can and do get better.

9) Learn your limitations. This was particularly hard for me for many reasons, the most notable being that my limitations seemed to change from week-to-week, sometimes day-to-day. It took a while to learn how much activity I could sustain before becoming incapacitated. In time, by paying attention to my physical symptoms and by making accurate journal entries, I got to a point where I could predict how much activity, as well as what kinds of activities, I could tolerate before needing to rest. The goal is to not push yourself to a point where your symptoms are really bad. Once you’ve hit that point you won’t bounce back right away. Learning your limits is the first step in reclaiming your life.

10) Understand that you are going to have bad days. Sometimes it seems like I had regressed weeks in my recovery. Do not get discouraged. Figure out what put you back in that place, make adjustments, and remember that your good days are a benchmark. You can learn to make every day as good as your best days and use that understanding to accelerate your recovery.

11) If you have speech issues, singing may help you overcome them. If your condition is similar to mine you will have to wait a little while, but once I could tolerate the noise I was able to recover from the worst of my problems in about a month.

12) The physical symptoms are only part of the challenge. You may also face significant psychological challenges. Do not let this diminish your hope. I am, for instance, having to relearn some pretty fundamental stuff like how to stay on task. How to keep my fears in check. That when I become irritable, its really about the fact that I’ve reached my limit and just need to rest to right myself. But I am relearning and it’s not as hard as you may think. It’s just scary when you first realize how far reaching this can be. I have no doubt that in time all of this can be overcome.

13) Last, accept that you will never be the same. It is unavoidable. This experience is very traumatic, there is no way you’ll come out of this the same person even if you do fully recover. But you can come out of it a better, a stronger, and a more grounded individual. I have come to view my experience as a rare opportunity. How often do people get the chance to rewire their brain, to have their life razed to its foundations, then rebuild it? That’s what we get (yes, get) to do, and I personally, in spite of the suffering and the hardship, will accept nothing less than coming out of this a better individual.

So five months into my recovery, I still have good days and bad days. I’m still learning my limits and learning to accept the changes in my life. I’m not exactly sure what the future holds but I can say that I no longer live in constant pain, that I’m putting my life back together, that I’m working, that the time I spend with my children is just as fulfilling as it always was, and that I know I can relearn everything I feared I had lost. I’ve also been sensitized to how amazing the brain is, how resilient our species is, and to the fact that the things that truly made me who I am are immutable.

I wish you the best of luck. Be strong, stay positive, be patient with yourself, and embrace the challenge that has been placed before you.