I’ve finally found a moment to check in. February came and went and now March is upon us. Time stops for no one and things change faster than you can keep up with. One day I’m begging for more work (for the most part I’ve been able to telecommute) and the next I’m overloaded. I’m not really complaining because I’m liking this latest project but the family still needs full time care and even though we have help, I often worry they need more.
They work so hard every single day just doing the basic every day things the rest of us don’t give a second thought to. They’re gaining strength and coordination all the time but they’re experiencing falls and frequent fainting, which is disconcerting, especially for those who have already suffered a TBI. The nightmares are worse and so is the PTSD in general. It’s difficult to see them struggle and it’s excruciating imagining what haunts them in their latest dreams. Our nights are very long and our days are spent recovering – from a lack of rest, from nightmares, from everything.
Good healling thoughts to you guys. I hope you continue to experience good things and progress for the family.
Thanks!
I admire you all in all that you are dealing with, coping with, and facing each day. Good and healing thoughts to yous.
Kate
Thanks, Kate. As always, we wish the same for you all too.
So glad that you’re able to telecommute. That must bring them some comfort to have you there with them. I hope those who are helping are kind to them. Sending positive and healing thoughts that include hopes for an end to nightmares and restful nights sleep for all. Wishing there was more I could do.
I don’t know if I ever properly thanked you for thinking of them when they first were in the hospital. That shout out during The Playground was such a thoughtful gesture. Thank you for all the kindness and support.
Yes you did.
You’re very welcome. just wish there was more we could do for all you.
I think just knowing there’s so many kind people out there wishing the best for us helps a lot.
Such a blessing you are foe your wife! And all the love you get back I’m sure you feel blessed too!
I feel extremely lucky to have them in my life.
Deepest sympathy on dreams. Hard to live during the day when sleeping at night is a nightmare. Healing seems to come with one step forward and 10 back. Over all progress is important to review. I am glad that you are enjoying your work. The family will survive because that is what they do as a team. Amazing how they help each other out. Tough when they are all tired together.
Yes, that’s the positive and negative with DID. Certain situations affect them all and when their exhausted, they all feel it. I think the hardest part for them is between sleep and awake when they’re not sure what’s real or not.
Thoughts are with you all. Glad to hear from you.
Thanks, Jasmine. Hope you are well.
for us, healing and recovery have been directly proportional to the amount of love and acceptance we have experienced (mostly from within, but some important people along the way have had huge impact obviously). you show them so much love and acceptance i am certain it is hugely healing.
and we all love you and the family too. sounds sappy but love really is the most powerful force there is and it can heal (bunny would say it has healing magic like fairies).
it sounds very difficult at the moment, but also so full of effort and determination. just wanted to validate that you are doing a lot for each other simply by each working hard on your respective things and loving one another. that is so much.
i’m sorry it’s so hard. but i’m glad you have each other.
I appreciate the validation and support. If only love could be all healing. They really could use some magic like that right now. We all could.
Hi, Ben. I’m so sorry about what your family is going through and have been praying for them and you. I’ve had some brain injuries myself and I’m wondering whether you have ever heard of Hyperbaric Oxygen Therapy? It was a miracle for me in terms of improving my coordination, speech, and strength. Basically they have you go in a pressure chamber for a certain amount of time each day, and you breathe in pure oxygen. I know your family doesn’t do well in hospitals, but most places that do HBOT are actually private clinics and not hospital-like if that makes any difference. The place I went was great, and they let a family member go into the chamber with the patient(s) if they are nervous. It was a struggle to get insurance to pay for it, but it ended up being worth it. Sending healing brain brainwaves their way <3
Hi Lemon Ninja,
As a matter of fact we have heard of HBOT and I’ve read about others who have had success with it but unfortunately the insurance company says studies which prove it positively affects patients with TBI is “lacking” and therefore will not approve it. We can choose to appeal it but I don’t think any of us have the energy right now. I’m happy that you persisted with your insurance and saw positive results. I appreciate your suggestion. This is something we’ll definitely keep on the back burner for now.
Thank you for your kind thoughts. We appreciate any positive energy sent our way.
Take care,
Ben
Hi Ben- I’m sorry your insurance is not being cooperative. I feel like they only cover the things that don’t work!
I know this is a bit of a stretch, but I’m wondering if perhaps enrolling in a study would be something you all are up to? That would take care of the cost of treatment, though it would probably involve a few more doctor visits, so I don’t know if that would outweigh the benefits for your family with all they are dealing with right now. The HBOT place I went to was taking part in a TBI study while I was there, and I’d be more than willing to contact them and see if, per chance, there are other studies going on in MA, if that’s something that you think may be beneficial to you.
There is something that’s free though, that promotes overall healing through oxygenation of tissues and a reduction in release of stress hormones (which can cause a lot more physical damage than they’re given credit for), and can reduce overall anxiety and stress levels, that I’d like to share with you in case the family would like to give it a try (it would be good for you too!). It is supposed to be excellent for PTSD as well.
Find a place that is safe and relaxing. Sit down with your legs uncrossed (if possible), then rest a hand on your belly. Focus on the way you are breathing- is your hand moving up and down because you’re breathing with your belly, or are you breathing mostly with your chest? Most people breathe with their chest, and people with high anxiety and stress levels do so even more. This is actually part of the fight or flight response, which shuts down things like healing functions that aren’t essential to use to get away. It is really only supposed to be used for a few minutes at a time, so using it all the time can actually keep your body from healing normally. The following couple of exercises have you breathe with your belly, which is how we breathe when we are relaxed, which can cue your body to realize that it’s okay to put some energy back into the things it usually does!
For starters, just become aware of your breathing patterns. Don’t try to force yourself to slow down or breathe for a certain number of counts. Instead, just focus on breathing with your belly. Gradually this will become easier, as your body starts to notice that the chest breathing isn’t happening and thinks “well hey, maybe I don’t need to be doing that after all!” Even just doing this a few minutes a day can be beneficial. It’s best to do this at least once a day when you are not having an exceptionally bad episode. This way your body will learn and remember the cues to calm down if you try to use the breathing as a means of stopping a panick or fear response to something. I have used it to actively shut down migraines, and went from 2-3 a week to only 2 in the past 9 years!
Once you’ve got a hang of the belly breathing, you can try a slightly trickier method of healing visualization. Imagine you are breathing in a beautiful healing substance. I visualize a warm, white fog, and my brother visualizes a green shimmery substance because green is his favorite color. I bet it would also work to imagine a mix of things if different things feel more healing to different members of the family. As you breathe in, see this substance travel down your trachea and settle comfortably just under your diaphragm. As you breathe out, use your breath to push the substance towards the areas that need healing. Not forceful pushing, just like a gentle wind that guides it to where it needs to go. Watch it settle in there and imagine it soaking in and replacing any pain or injury. Start with just once or twice, as it can make you a bit dizzy if you overdo it.
Lots of healing thoughts to all of you <3
Hi Lemon Ninja,
A study may be available in our area but there’s just no way they’d be up for it. It’s a struggle getting them to go to their already scheduled appointments as it is. I do appreciate the suggestion though. Also thank you for sharing the breathing technique. I think they’ve tried something similar to it before. I’m not certain how well it worked for them. They’ve had some trouble in the past with breathing exercises suggested by therapists and I think it’s been somewhat of a trigger for them since their breathing being cut off was often part of their abuse. Asthma didn’t help. But thank you. We can refer to your comment when and if they’d like to try it.
Take care,
Ben
Hi Ben,
Thank you for letting me know about the trigger issues with the breathing exercises. I wasn’t aware that could even be an issue, and will keep that in mind if/when I recommend it to others in the future.
I will be thinking healing thoughts for your family and you while I do my meditating, and hope that some of the peace and calm will find its way to you.
<3 Lemon Ninja
Thank you, LN!