How do you get through your darkest days?
 

Hello, since our last chat didn't go as planned. I decided to start a thread on the topic, because I would really like to know how everyone else does it. Some days, it is nothing short of a miracle that I got through the day...

The chat w/ joe in LA worked out well for me since having more than a person or two in chat mode is too much stimulation. so if anyone ever wants a short (15-20 min 1:1 chat), let me know.

how i got through my most recent dark days: i couldn't look on the bright side or reason with myself. the dark feelings are just too strong. so i just told myself that the world needs me, or at least wants me around, and all i needed to do that day was breath.

if you ever get too down, feel free to friend me and I'm always up for a chat stuck in the house way too much with headaches so unfortunately I'm here :)

My darkest days... they are many. But I hesitate to post what gets me through them because it sounds, trite. But know that it comes from a place of suffering, like the rest of you. Its been 2.5 years since my injury and I've had very little healing take place.

I've not had a single day, a single moment yet without excruciating head pain in those 2.5 years. Nothing touches the pain, no combination of ibuprofen or tylenol and I'm allergic to many narcotics. I've had many intolerable side effects to many drugs tried and many just haven't worked. I tell you this just so you understand that I didn't just have a bump to the head and am all better and am now saying this.

So what gets me through my darkest days... is remembering that nothing is forever. Everything always changes. The old saying "This too shall pass". So when I'm at my worst and sitting in the pit of despair, I try to remember that this isn't forever even though it seems like it. I just have to hang on and something will change.

So for now, I just keep trying to do what I can to get better and balance that with continuing to live my life (because for me, often those things seem mutually exclusive ;) ) and move forward as best as I can, inch by inch even though it seems nearly impossible and honestly sometimes futile. But I only have one life to live and I'm not spending ALL of it sleeping in a dark room! I have things I want to do!!

And I try to find little things that make me happy... my new baby goats, while incredibly demanding and absolutely oblivious and selfish to the fact that I have a brain injury are wonderful and bring me joy, though I do wish they would not scream quite so loudly at feeding time, its brutal to my head!

But when I go out there in the morning and they are so happy to see me and I kneel down and gather them all up and give them hugs and kisses, the screaming doesn't seem quite so bad :D Until they jump on me and knock me down! LOL!

I know for me, having my dogs, goats and chickens is therapeutic. Knowing I HAVE to get out of bed because they depend on me for food and water etc is important. Knowing their needs come before mine no matter what is motivating to keep the self pity to a minimum. And knowing that my dogs and goats are all good snugglers and none of them mind to have tears on them is reassuring. They don't judge as long as their bellies are full and their needs are met. :)

Starr

This thread might be of some help:

http://neurotalk.psychcentral.com/thread164040-3.html

I am 3 1/2 years out and nowhere near recovered, but I have come a long way from where I was at my worst. Looking back, I too do not know how I made it through it. This forum helped, as did knowing that there are people in the world (my family) who need me to stay alive, no matter what. I had also already been through hell with my OCD and CFS prior to the injury, so having made it through that, I suppose I knew that I was resilient enough to survive this too.

I still have very dark days in which I don't know how I have managed to survive for so long. I still have a long way to go, but my symptoms have very gradually gotten more manageable, and I keep discovering additional ways of working around them.

Peace

Good question.

Hour by hour. Digging deep to find inner strength. Trying to find joy in very small things. The texture of my children's cheeks.

Keep breathing. Minute by minute. Hang on. Remember who you are inside that injured brain. Your essence is there. You will shine again.

Thanks for the great posts,

how do I get through my darkestdays? Well I can barely make it to the bathroom anymore because I am so dizzy. The pain and burning in my head spine and arms is almost constant. I have no bank account and don't see how I would survive financially in the coming years.

I am 170 pounds overweight with palpitations and the pain doesn't help my heart. I am 46. I compulsively check the stock market everyday and have watched it double and triple over the past 5 years and I figure out on the computer how much my 401k would have been worth if I didn't have to empty it out. It is an insane thing to do but my obsessive compulsiveness is off the charts.

I used to deal with my darkest days by once taking 60 xanax and another time trying to hang myself but I was too heavy and ripped the vent out of the ceiling. I hurt my neck badly in that case and both times it was mandatory i was sent to the psychiatric ward.

sometimes I daydream and make believe I am laying down in bed with the wife and child I would have had if I did not get myself sick at 37. sometimes I make believe I'm playing ball with the Son I don't have.

sometimes I imagine my child playing with the children of my childhood friends who have none of them called me in years since I got sick and who I thought I would grow old with. I occasionally think about the many friends at my job who I lost.and I think somtimes about the job that I enjoyed and thought I would retire at. I get through my darkest days by knowing that I probably only have another year or two left in this condition with so many pounds and cholesterol and triglycerides that are off the charts..but it.doesn't bother me nearly as much as you think.

Life is a game of cards and I played my hand. It's as simple as that. I don't have children which seems to be the driving force for a lot of people on here nor do I have the fight of a 20 year old and the hope that goes along with it.

I do not have Mark in Idahos stoic resolve. my nieces and nephews think I am a bum and the rest of my family thinks I have severe mental illness or a drug addiction. how could an unseen head injury cause so much damage and loss they ask? I even have moderators and experts from this website question how the pills I took and alcohol I drank with it could cause so much damage. I tell them to take the same medication in the same dose and drink the same amount of liquor I did and see what happens. Arrogance combined with ignorance is a dangerous combination sometimes.

It is what it is. There are six billion people on the planet. One more life give or take isn't going to change anything. I am NOT looking for sympathetic responses or pity.

I took incredible chances with very dangerous medication out of self pity so this is no fluke what happened.

also the chances that a treatment will come out that will alter or fix perhaps tens of millions of damaged neurons in such a way that different parts of the brain will work together in sync again is practically nonexistent so after 7 years what I am is what I am going to be.

don't read any more into what I wrote than what is here .Someone asked a question and I answered it

Perhaps mark in Idaho is right. This board is best left for questions about physical ailments occurring from concussions on multiple concussions. Perhaps a spirituality room could be formed in the tbi area so the 2 wouldn't mix so much.

oh and I forgot sometimes I get to do the word puzzle when hockey or mark in Idaho does it and I try my hardest to leave a big word at the end of the sentence and hope they do the same as it gives me pleasure.

MarkN,

Why do you say I have stoic resolve ?

I never said this forum should be reserved for questions about physical issues. I know there are far more than just physical symptoms that we struggle with.

Regarding the word game, I do not have the cognitive energy to take on the long words. My word finding ability is very poor. Has been for over a decade.

I am sorry for putting words in your mouth mark in Idaho. I said you have stoicsm because you just seem to deal with your multiple issue in such an incredibly strong way and that I admire very much and am trying to figure out how to achieve.as far as the word game I keep forgetting that cognitive abilities have been affected in a lot of people and I am sorry for that. I do enjoy that game though very much. I don't know why lol

I have learned that complaining does not help. The computer does not transmit my struggles unless I post up about them. I know the limits of doctors and meds. I know that we are the most influential to our own recovery. Professionals can treat us with therapies but unless we do our part, those therapies will not be as effective as they can be.

The biggest challenge we face is accepting our current condition. When you have dug yourself into a hole, the first thing to do is Stop Digging. Living with unbridled anxiety is like continuing to dig the hole.

We need to measure our recovery discipline day to day or even hour to hour. We measure our recovery week to week or month to month.

Some of our symptoms and struggles will be prolonged or even permanent. But we can do many things to manage and moderate those symptoms.

MarkNeil, i don't know you, but i second MarkinIdaho's encouragment to stop digging. You've extended kindness and help to me and to others on this forum. That matters. You matter. We all do.

two quotes/images have been helpful, in my semidark days when reason is still circling in reach:

from my sister: "The tide will not stay out forever." Having faith I'll recover fully in time to save what's important to me has been a struggle. But PCS is something you cannot strive to fix, just as striving will not make that tide reach you on the beach any sooner. The more patience & faith i bring to the waiting, the easier the process will be, and who knows, maybe it will be quicker.

"You will face many defeats but you must not be defeated. In fact, it may be necessary to encounter the defeats so you can know who you are, what you can rise from. how you can still come out of it." Maya Angelou

My comment about Stop Digging was not aimed at anyone in particular. Many ask for help with an issue but after receiving reassurances about that issue, continue to be anxious. Even our injured minds are highly capable of sound thought and reason. We need to make sound choices in our thoughts. Otherwise, we will continue to spin in miserable circles.

my life has been hard since I was 14 as it has been for many people. I have sabotaged myself a number of times in life just when things are getting very good. It is what it is and at this point I'd rather enjoy one of the few things I do enjoy which is bad food than give it up and live to 80 in this condition. It is a decision I can live with. I sincerely appreciate your concern.

In a word, BADLY. lol

On dark days (like this one), I can be a real troll to those around me. In those moments, I do better if I'm left alone to regroup, without having to exert the energy required to play "normal."

When all is said and done, I keep going for the sake of my child. Without that external motivation, I don't know what I'd do.

hockey you under stand. Putting aside all the stuff about how every life is important etc etc. I am 46 way over 300 pounds no kids no money in constant pain etc etc. I enjoy eating unhealthy food it is one of the few things I have left since I can barely get out of the house due to the issue. I rather enjoy it for another 2 years then live like this for another 30. I have no kids and family thinks I'm nuts anyway and friends disappearI have my food and my cat and I won't give them up for anybody lol and I have the word game lol

I hear you.

My husband is a health nut/hypochondriac and is always trying to get me to take bizarre supplements and eat revolting stuff, so I can live to 90. Insensitive clod! :ROTFLMAO:

Why on earth would he think I'd want to live with increasing levels of pain and limitation for decades? I just want to last until I launch my child off into the world. After that, I hope I'm allowed to check out quickly.

So, stick the sticky, fermented Japanese bean curd, and pass the Coco Pops. Yes, I realize that this is sort of a form of self-loathing and passive suicide. However, I'm not super cripple, and all that gets me through what I need to get through for my growing child is the knowledge that, one way or another, this will end.

I have done my mommy duty, in trying circumstances. When my eternal rest comes, I will have earned it.

hockey only your post could get me to laugh after me writing one of the most depressing post on this board in history an hour ago lol. You understand what I think so well and the tragic comical rony of the situation is not lost on you. You are so funny when you talk about the foods your husband wants you to eat and yet you get it. You get it.

Yeah, but still part of me wonders if we wouldn't feel better if we could feel in control over that aspect of our lives. Maybe we could become healthy eating buddies. Every time I wanted a twinkie (although I've never actually had one), I could PM you and you could talk me out of it - and vice versa. Maybe we should start a PCS/TBI weight watchers group. If we fail, we can just swap recipes.

I hate to see you give up. You're seeing a new neurologist and you might get answers. If I was just battling the TBI, it wouldn't be quite so bad. My prognosis is not good, because of the spinal stuff, and I dread the idea of being a burden to my kid. Like she hasn't endured enough, already.

when you have a kid it is a totally different world. I desperately wanted to understand it but it didn't happen oh well. I can be much more nonchalant about my life because I don't have a kid.I also have two brutal acquired brain injuries and along with those two injuries, symptoms that concussion people don't get that aare horrifying in their own right. I wont tell you them because some of the symptoms are disgusting and some of them are personal. But they suck lol you must fight for your kid. Me I'm going to have another hot dog lol
you are the best

As a general observation, I find that people with spiritual belief, like yourself, seem to cope better with TBI. Do you feel that your religious convictions play an important role? Faith, alas, is a gift - and I do not have it.

From my observation of my family, who is Christian, people with spiritual belief cope better with anything. Also, if they attend churches or religious gatherings, they become part of a community who are more accepting than the norm and willing to help.

Will, by "family," do you mean extended family? Your mother, as you've said, is having a great deal of difficulty accepting your TBI.

Hockey,

My faith and ability to seek comfort from God through prayer makes a HUGE difference to my ability to cope.

Good topic, thanks for the thoughtful replies. I do come from a religious family but that doesn't help my bad days at all. I'm happy for those who do find comfort there.

What I do that helps - me - first, I call a suicide hot line. I'm not coherent or physically able to be actually suicidal. But I find many of the hot line volunteers understand intense pain, hopelessness and disability.

The other thing that helps is when I talk to my malpractice lawyer. If there is one person that understands my anger with doctors who cause injury and don't care - it's my legal folks.

that happened to you too I got screwed bad by the doctor at the Medical Board found him guilty of no wrongdoing. What happened to you. I hope you're hanging in there

Yes, although the printed word is a tone deaf medium, I think that still comes through your posts. Your acceptance of your injury seems not to be the product of despairing resignation, but rather a certain, if you will, state of grace.

You are, in an importance sense, a very fortunate man.

I'm not sure I have much of a perspective to offer here as I'm still having trouble coping with dark days, but I can say that when I've been at my worst calling loved ones and talking with them has helped tremendously. I've also found regular meditation practice has allowed me to recognize anxious thought patterns (such as anxiety over a minor head jolt or something) and try to recognize it as unproductive and stop it. Being a month in on lexapro might also have something to do with that, but I got better at recognizing anxious thought patterns before that, so I think meditation did help!

I feel I'm less able to control depressive thought patterns, and find myself more depressed than anxious nowadays. My rational side knows that most people with PCS eventually get better (minus susceptibility to stress, further concussions, etc.), but I just can't seem to truly believe that I'm going to get better. I think being profoundly optimistic would probably help my recovery greatly, but I just can't seem to jump wholeheartedly on that bandwagon.

I feel like if I had a greater capacity for faith that this would be much easier, but I just don't. I've defined myself for a while by my lack of faith, but have kind of wished that I had some, as it might make this easier. But, I'm just not built that way (no offense intended to religious/spiritual folks, people can have good reasons for believing, they're just not reasons that I share).

Anyone have any insight on how to foster the belief that things will get better, that we will regain what we've lost (even if in reality we might not)? I imagine I'm not the only person who has struggled with this.

Wow, i feel like i could have written these words myself, which gives me a small amount of comfort to know i'm not alone even though i feel lost. hang in there...when/what was your injury?

I'm a 25 yr old grad student, slipped on ice Feb 2014, initial symptoms weren't too bad, mostly headaches and just not feeling like myself. A minor head bump 5 days after sent me on a downward spiral of anxiety and depression, plus insomnia. Over the next few months I started to do more, but the headaches and minor difficulty concentrating didn't get better. Then I went on a backpacking trip OK'd by my doc, which went fine, but I started feeling worse when I got back.

Throw in another headbump, stressful breakup and a minor car accident during June/July and the headaches got much worse, as well as difficulty reading and looking at screens, dizziness, and anxiety and depression. The worst is just not feeling like myself - I used to be very active physically and mentally, and find joy in just about everything I did, and now the cloud of this concussion darkens everything. I still do find joy in things, but it's not the same. I just want to feel like myself again, I've accepted that I won't for a while, but I wish I just believed that eventually I will again.

Hockey, I PMed you.

Since the injury, I have wished few times that I could be a Christian like the rest of my family. I am just not built that way, either.

I believe that we never stay the same. We get a completely new body every 7 years(through cells dying off and getting new cells). Our perspectives, belief systems change through new experiences. In this sense, we will never be the same.

For something gained, there is always something lost. By the same token, there is no pure loss, as we would surely have gained something: resilience, gratitude, acceptance to name a few.

What gets me through is thinking about my legacy to humanity (for folks who don't have children). I think about people who have inspired and continue to give me strength. I think about Helen Keller who never gave up. I think about others in worse shape than I do, who keep fighting with a smile on their face. I cannot let these people or myself down. This keeps me going.

That being said, I am scared. I want to feel like "myself"...

Lovely, thank you.

This is long so feel free to ignore. Re faith, a lot of Anne Lammonts words below resonate with me. The last paragraph i believe so firmly, have seen so clearly in the way friends, health care providers and strangers have been so kind to me.
_________

Many mornings I check out the news as soon as I wake up, because if it turns out that the world is coming to an end that day, I am going to eat the frosting off an entire carrot cake; just for a start. Then I will move onto vats of clam dip, pots of crime brûlée, nachos, M & M's etc. Then I will max out both my credit cards.

*edit*
Facebook copyright issue
Anne Lammonts words

I used to watch the world news all the time. I don't any more. It is not healthy for me. There is nothing I can do to change what is happening in the middle east. Iraq has already taken my daughter from me. I hope someday to get her back. Her deployment has left her needing a very long healing process.

I have lived with PCS for almost 5 decades. I continue trying to do what I can for myself and those around me.

The current strife in the world is nothing compared to WWII. My mom lost her brother in that war. Many did.

But, life goes on whether we focus on the bad or the good. It is much easier to live without focusing on the bad.

If we are going to get better, we MUST avoid anxiety inducing behaviors. Plain and simple.

willgardner,

The brain does not regenerate brain cells like the rest of the body. If it did, we would lose all the learning of the past. It is sad you believe you are not built in a way that you can be a Christian. I sense a hopelessness in your comments about life.

I've been to Israel. What a beautiful country. The fact that it has survived over 2000 years of strife shows somebody powerful is in charge. Even Hamas complains that their rockets are redirected by the God of the Jews so they miss their intended targets. How have 5 million people fended off 50 million people who want them wiped off the face of the earth ?

I look at how the brain works and see divine design. Even when it is damaged, it follows a intricate design.

But that is my opinion/belief. It has benefited me for decades.

My best to you all.

I did a quick internet search. You are right. Brain cells do not regenerate like the rest of the body.

i stopped watching the news. Mark is right. It is stressful and there is nothing I can do about it. It wont affect me and I have no kids to worry about.

Not believing in God and not having kids makes this a devastating illness to live with. There are no brighter days coming in this life as there is no real hope in our generation for a "cure".

The darkest before the dawn doesn't apply. I will be sick and childless in this life until I die and cease to exist. The possibility of dementia or Alzheimer's is increased with multiple brain injuries and the possibility of living in the street with a brain injury is for me a possibility.

Grooming has gone out the window and I look like a Wildman with my hair and beard. It can be up to 2 to 4 weeks before I leave my house. Usually to psychiatrist to get pills. I have stopped taking the nonessential pills for blood pressure, cholesterol and dexilant for Barrett's esophagus.

In my dreams I am almost always young, and the long dead are almost always in them. There is hope and youth and possibilities in those dreams and I wake up devastated from them. Last night I closed my eyes tight hoping I was still 15 and this was a terrible dream and a warning to live my life carefully. My life has become a horrifying Twilight Zone episode.

My lifeline is Ambien Xanax and Advil PM with the occasional oxycodone if I get to my old pain management doctor. I had depression before the injuries and as you can see, it is magnified with the injury.

I was 37 and completely healthy besides depression, had a great job, friends and a great family. For some reason I decided to drink with dangerous medications and get my first abi. If there is a God, I will have a lot to answer for.

Certain senior members of this board and I are a contrast. Two ways to approach the injury. I suggest you take theirs. Hopelessness is a terrible and dangerous place to be.

Do you think you could benefit from some inpatient time at a rehab hospital? Not a psych unit - a rehab hospital.

I am a great believer in neuro-plasticity. With therapy, I feel you could learn to cope better with the tasks/challenges of daily life. That in turn could give you greater confidence and self-esteem. Just being in a more structured environment might help you get more grounded. I do so much better when I have a routine to follow.

I know it's hard - believe me - but I feel that you might be underestimating your potential. Do yourself a favour: go on you tube and watch "The Brain that Changes Itself." When I'm down, I watch it again - and it gives me courage.

Man, if you knew where I'd started my recovery... Even the doctors told my husband I was a "right off." Well, in your face, white coated devils. :D

yeah girl!

I'm going through my darkest days now and this is not going well. I cry constantly and just can't stop.

My cat is sick. The receptionist in our veterinary hospital was talking to me like I'm some kind of retarded or plain stupid person (I didn't get much sleep last night because of my cat that made me even more slow than I already am). I came back home crying. Still crying in fact.

My kids help A LOT. I think they are what helps me to get through my darkest times. They always tell me that I'm the best mom ever. They draw cheering pictures for me (like flowers or trophies for the best mom). I am so blessed to have such wonderful children.

Favorite movies also help. I can't watch much of a TV, but I put them on and I listen. I find that very relaxing + listing to my favorite movies takes my mind off sad things.

Sometimes crying helps. Or kicking the wall. Sometimes you need to let your emotions out so they won't damage you from inside.

Starbucks helps. When I feel down, I go to Starbucks, order myself a latte (I know it's breaking the rules). I sit by the window and watch people or cars. I find that peaceful.

Baking helps. I love to bake. My kids are so spoiled, they don't eat store bought muffins, scones, cupcakes or cinnamon rolls. The only thing I buy is cakes when I need one because I suck at baking cakes.

I'll think of something else that helps.

I pray for you all
Marina

Luckily for me, after almost four years, it looks as if my darkest days through this ordeal are finally behind me.

But I still remember them...

I would create jokes out of anything I could.

I would also try to relive my favorite memories - but this technique would backfire sometimes because half the time they would make me very happy that I got to experience them at all and that I lived life to the fullest when I could sometimes they would make me very sad that I never thought I would be able to enjoy life again like I did before the accident.

And I also liked to plan what I was going to do and think about that... if I could make a plan for lunch with a friend or family member, then thinking about it, or getting ice cream, or chocolate, or whatever would make me happy, or just knowing that I would.

Or wondering what I was going to do with my life - MarkInIdaho helps so many people here on Neurotalk every day, or several times a day, and he is doing something very productive. Would I have done something similar if I couldn't return to work full time? Or would I have done something else? What field of work would I have gone into if I had to leave the one I'm in?

Daydream

Sometimes the pain was so severe all I could do was pray.

lately I am getting through my darkest days by sleeping 16 to 18 hours a day. My girlfriend hates it and says she is alone all the time and that I have given up. I don't know.