Hi! For me, brain retraining is really the only thing that has ever moved the needle. I started out bedridden and getting very close to being unable to get to the bathroom anymore (I had a commode that I used sometimes). I am still housebound, but after brain retraining I can get all my own meals (previously they were brought to me in bed), and use my whole house, not just my bedroom. I also needed to be in the dark and wear earplugs all the time when I started, but I'm okay with light and sound now. I had been bedridden for 25 years, but I was also going downhill. It has meant the world to me to have these improvements--such a quality of life upgrade!
There are for sure free ways to do this! you could try EFT tapping (learn on youtube or Instagram), self havening, and just learning more about how the limbic system works, and about polyvagal theory. All of the brain retraining programs I have learned really dovetail with these strategies:
1. self care, by encouraging yourself through difficult moments, spending as much time as possible in a "happy bubble" with as little stress as possible--I know it's hard!! But with little steps, I think most people can make some progress towards that. It doesn't have to be perfect.
And it's not forever, just until your brain heals. In polyvagal theory that is called ventral vagal state--rest, digest, and heal. Tapping and self havening can help you stay in that state for more time.
2. paying attention to your thoughts and noticing when they are unpleasant, then applying that self compassion and kindness and helping yourself through those moments, then getting back on track with your happy bubble when you can
3. setting aside time every day for complete relaxation, whatever that looks like for you. Could be any kind of pleasant meditation, enjoying happy memories, spending time completely focused on an affectionate pet, etc. Get "greedy" and make sure it's really wonderful! You deserve it and your brain needs it to heal.
4. for me it was tremendously helpful to notice and keep track of any wins I have in a journal (I just used an app on my phone)! I don't mean symptoms disappearing (although those too! ), but little shifts in mood, times when I brought myself back to ventral vagal, and even noticing my mental state so I can intervene. You can't stop something you don't know about, so noticing is actually a huge win, and it took me years to get good at that. But it's been SOOO worth it! Hopefully you'd be a quicker study.
Teaching your brain to fully relax and heal you is a process, and it's important to have encouragement to keep going.
it might be a few months before you notice any changes, so I recommend expecting that and deciding ahead of time how you will help yourself through any times where you need motivation to keep going. And if you decide to try this defiantly enlist support from family and friends!
It might sound like brain retraining is about psychological stuff, but it is not. It's about having a slightly wonky limbic system, a brain injury, and the only way we really have to influence that is by spending more time feeling good.
Being in ventral allows our body to heal *in general*, by teaching our brain that it's okay to chill out and heal the body. Might sound kind of *ss backwards
, but I know a lot of people besides me who have been helped.
There's too much to write here, but those are some starting points! Personally, I feel like I needed the structure of a program to keep me on board with those kinds of things 24/7. Also, there is a super supportive community for each program, which really helped me with ideas and persistence.
But other people have had success with just applying it themselves! If you're interested in trying, think it might be worth checking out some of my suggestions and see if any of them resonate with you. Also, if you are religious or spiritual I have noticed that it can really help to bring that higher power on board with your self-made program.
You don't need to go full bore like I described, but I think for me it was necessary to spend a ton of time on it in order to get better. You could just try out a few things and see if you like them, ESPECIALLY if you feel like any of what I described might possibly make you worse!!!! You do NOT want to trade your health for more time doing a program--it won't fix your brain (because it's stressful), and of course it's dangerous with PEM. So, go very gently, and honor your own journey! Good luck.
