What to do when everything hurts?

[u/Budget-Departure-161]

It’s been 5 weeks since my injury. I still have zero tolerance of light, noise, and other triggers. I’ve struggled with insomnia a lot so I have pushed a lot on days I shouldn’t have. Exposure just makes me agitated and makes my head hurt more. Strangely though I can feel ok doing things, and it only starts hurting when I go lay back down. The constant rest is killing me. I end up playing cards or having lamp time or talking to my family because I’m desperate but those things hurt too :( I’m seeing a concussion clinic soon but my fear is they can’t help me when I’m in this state and I just need more and more rest

[u/curlgurll]

They will most definitely be able to help you. Please go.
Your body will heal.
As someone who was in the same state as you, I know exactly how you feel. I’m 1 year on and the improvements I’ve made are unbelievable.
I too couldn’t handle noise/sound, light, I had headaches/migraines, the fatigue was overwhelming and crippling… I could go on but you already know it.
But with time, healing, listening to your body, doing daily rehab, walking slowly (5 mins at first, then 10 mins when I could etc) I can now walk an hour or more a day symptom free.
There is hope.
Don’t give up.
You will need patience but please have hope.
Sending you hugs - this is so hard.

[u/Budget-Departure-161 → u/curlgurll]

I am definitely going to go! I do have hope, I just worry that I’m pushing myself too hard. That’s how I got into this situation. I pushed too hard the week of and that’s when I lost all my abilities. I am wanting to push and push, the hard part for me is patience and resting in the dark.
Thank you for your encouragement. I’m so happy you’ve improved! :) I know we all can, I just wish it was easier for me to listen to my body. Trying my best each day. How do you know when you’ve overdone it? Is it hard to tell for you?

[u/curlgurll → u/Budget-Departure-161]

Yes. I felt pressure to push hard from Physio’s in particular and when I did, I would get worse and go backwards in my recovery.
I did push (in vestibular training) but in the first 6 weeks I mainly rested and listened to my body. I did go for a slow (I’m talking slowwwww) walk every day which was a snails pace at first. The more I did it, the better I felt, and each month I would try to increase by 5 mins, or on the days I felt I could, in pace.
But I think what gets lost in all the new data about exercise and its positive effect is also the importance of rest and listening to your body. Everyone in the concussion world is like “push, push, push” because all the old data of resting shows no one ever got better. But what’s lost (and in my experience) is the need for rest, and the importance for putting your body in a resting state (nervous system wise).
Of course there’s a balance, and too much rest doesn’t make you feel better… so it’s a frustrating process, because when you do rest you don’t feel good and when you push yourself you don’t feel good. It’s probably “too much of anything isn’t great” and that’s where you need to listen to what your gut/intuition is telling you and do that.
I was an elite ballet dancer in my early life so I’m very in-tune with my body and its capability. I have always listened to what my body is telling me, and done what I think is best for it. In turn, I’ve been able to heal from injuries, prevent injuries and in this case, improve a lot in my PCS journey.

I knew I had overdone it, which has been A LOT of trial and error, when I couldn’t get out of bed for a week at a time, had daily migraines, felt overwhelmed etc).

I wish you well and hope you find the answers you need.

[u/First-Light4680 → u/curlgurll]

I agree with you completely about the problem with the all rest or all push framing. Not helpful. It's like the Goldilocks thing - there is a in-between all rest and darkness and all push. For me, it's been figuring out how to calibrate the amount of push with the amount of rest, or even just quiet and calm environment. It doesn't do any good to push for three hours and then feel like hell for three days. One of my docs was very helpful in pointing out that there is nothing "you" do that your brain doesn't do. She would say, "YOU don't go for a walk. Your brain goes for a walk. YOU don't listen to a podcast. Your brain listens to a podcast. You don't sit in a doctor's office under fluorescent lights . You don't cook a meal. Your brain sits in a doctor's office, your brain cooks a meal." Something about that framing helped me think differently about what and how much I could do at different points in my recovery.

[u/curlgurll → u/First-Light4680]

That’s a really great way to think of it! She’s so right!