Thanks it's so important!!! Love this list and awesome group of people :-)
I really like the warning that you should NOT try to talk someone out of the Depression phase. You have to let it run its course. I feel that way about my own depression, but I've never felt that way about others. I know my parents don't understand that at all. I also like that you say you go back and forth. I've done that so many times I can't count. I might share this with my parents and hope they will understand.
I hope it helps them understand --- also have you seen the "Spoon Theory" post here?
Use the search box for it - or google it perhaps -- goes well with my original post here!
Kc, I checked when you go to the link it's not available anymore...:( But yes, it was very good!!!
Time to bump this one - many new ones here!
Hi Kc
Thanks for bumping this up. I have been thinking about it since I saw it yesterday and realized I am probably here on this now because I am at the Acceptance stage. Ad last night before going to sleep I also realized that all my good friends are still my good friends but my colleagues are no longer really my colleagues and most of the people who live around me in my small community will still probably still greet me with BUT, you look so great.
One of the losses that bothers me the most is the drifting and slowness on the gabapentin. So recently I got a very close friend and my daughters to makes a list for me of the things they loved about me that have gone a little missing. What I realized is that those qualities re not really missing, they are a bit in hiding and they still come out. And it is also my job to keep re familiarizing myself with these qualities that are enduringly me and wake them up!
And helping others, YES! The other day a neighbour slipped on a lower stair and I could see she was a little bit in shock but not really hurt. I gave her a foot and ankle and leg massage and the whole time my own pain receded into the background.
Thanks again.
I'm really glad it helped....
the meds took away my dignity, selfworth and IQ -
so within a year I was on my way to surgery !
Well you’ve got style!
…and the surgery?
I’m seeing neurologist again on Friday
Been on a list to see NS for a year…
I bounced from denial to bargaining for the last couple years. I had TN1 pain and went through several drs. I was to the point that I should have gotten my diagnosis, but the pain was going away/changing. Then I was told that I might have migraines. I knew it wasn't true, but the pain had lessened, so I walked away. I stopped having the shocks, but had developed the numbness and tingling. I went into bargaining with God. "If you will keep my pain at this level, I will..." Then I would hear that still, small voice urging me to see a doctor, so then the denial would start. "The really bad pain is gone. I am better. I can live like this."
Now that the TN1 is back, I am angry for my kids. They deserve a full-time, fully functional mom. My husband deserves a wife that is his partner, not his burden.
Acceptance and depression seem to be woven together for me. I accept that I will live with this for the rest of my life and at thirty-five, that seems like a very long time.
Dancer offers a very useful insight, as do several others in the thread. Pain often causes anxiety and depression, and grieving for the losses due to all three experiences is both inevitable and valid. I also believe from experience that there can be value in respectfully asking people "are you stuck? Do you want to remain where you are emotionally? How's that working for you?" Sometimes such messages can seem unkind to people who are powerfully invested in the idea that they have a "right" to get back their old life in the same form or conditions that prevailed before the pain. But the operative word here is "seem". Perceptions matter. But perceptions are not fate. They are very often choices that we can change if conditions warrant the effort to do so.
I would add one further insight to those expressed by others in the thread. There is documented evidence that entering the "acceptance" stage of grieving is rather often associated with a lower level of perceived pain and suffering. Some of that evidence is generated from functional MRI which shows that the pain centers of the brain actually "fire" less often or less intensely or both in people who are able to find or create within themselves, a calm center of acceptance. So there is a basis in science for encouraging others to consciously work toward that state of mind. And this can be true for either religious or non-religious people. In a relatively simple phrasing of the principle, we can understand that our attitude very often powerfully shapes our experience -- and our attitude is within our power to change.
Add my thanks to those of others, Dancer... Your contribution is positive and thoughtful.
Go in Peace and Power
Red Lawhern, Ph.D.
Resident Research Analyst
THERE… yes, totally!! Felt pretty low this week…
NOW the insurance comp is trying to tell me that there are ‘competent’ docs here in Tenn that can do what a doc in Cincinnati can…NOPE…I HAVE CHECKED and I refuse to let just ANYONE cut on my brain!!! This doc is recommended directly from Dr Casey himself…that’s it! Denial…THERE! Depression…SO there! Am the stupidest person at my work…Oh; hon!! NEED MVD - by the doc I CHOOSE, NOT THE INSURANCE CO!! Please…
Kc Dancer Kc said:
I’m really glad it helped…
the meds took away my dignity, selfworth and IQ -
so within a year I was on my way to surgery !
my neuralgia started out of the blue, all of a sudden one day. There seems to have been no causing factor. I hadn't been to the dentist, I went there after it started because I thought my teeth were causing it. For years my wife would tell people (if I had pain in public) that there's "something wrong with his teeth". That made me angry/upset because this excruciating pain was reduced to someone who didn't take care of their teeth and had a mouth full of painful cavities. It scares her that there's something wrong. I get that, our futures are bound together, it isn't always easy for the spouse, family, friend etc to deal with this either. Sorry, guess I'm just ranting....again....lol.
So the stages....I'm at acceptance definitely. It may seem odd but I feel there are some things in my life that weren't there before neuralgia that aren't all negative. Yes, it hurts....a lot, No I don't get the treatment I think i should from the Doctor, It does affect me at home, work, sleep, diet, daily choices but it also forces me to stop, see, feel even if feeling means pain. It is not the journey I would have chosen but it is my journey. I accept that i am in pain, yet if I have a stabbing pain while talking to customers at work and I make a "noise" because of the pain or I talk funny....I still always and to my shame say "sorry" Why do I do that? That makes me depressed
Sorry for going on so......guess I'm tired from lack of sleep
I read the spoon thoery you mentioned. Great stuff, thanks
Kc Dancer Kc said:
I hope it helps them understand --- also have you seen the "Spoon Theory" post here?
Use the search box for it - or google it perhaps -- goes well with my original post here!
I keep getting stuck between anger and depression or a combination of the two. I hate this because I go for awhile and I think it's all under control, then I have days that seem like they will never end, like right now. I hate my life.
Some suggestions to get out of the loop when you are ready
Look up grieving books, audio
or counselor
See if med check would be a temporary help
A gratitude journal
Learn what works for you to work out anger…punch bag…paint…dancing helps endorphins…volunteer 1 hr week with pets or any body…your chemistry will automatically become nicer to yourself
Here are just a few late night tips
I hope to better is tomorrow…
Ps. I thought TN would get better…all is much better…since MVD…2 years later…
then BOOM…I had a stroke this week, at 50…!!
I’ll be okay…but I cannot let this take me back to the black hole where TN took me for 2 years of my life
Wishing you good health KC!!!
Pierre, its perfectly okay for you to vent here!! That is what our forum is for!!! I commend you on your ability to still work with the public, whilst in excruciating pain… I know what that is like. And to even have a smile on your face which I am sure you try to do and keep on going!! You are one verry strong person.!! Don’t forget that!! There are not many who can do this!!
Try not to be cross with your wife about the teeth thing. I know how you feel. Even when I think my husband gets this after 8 years…I know its impossible for him to reallly feel the depth of what we go thru. But I have felt it…and know it…many times over. We are for each other and WE know what really goes on. Stay strong my friend…
Peace, Min
I was talking to my Mom today who has been suffering anxious thoughts keeping her up at night (she is 82 living with my Dad 90) and we decided to try a daily journal. We call it our "Peace of Mind Journal" You take a page and draw a line from top to bottom and then from left to right so the page is divided into 4 sections. On the lower Left section you write a list of your fears and griefs that you are feeling today, then on the upper left section you write what you are feeling gratitude for. Then on the upper right you write the things you are thinking you should do today and the lower right things that you want to do in the future. Then you sign and date the bottom of the page, signalling you are letting it go.
The goal is to externalize all those things cluttering our mind. Then the next day you do it again with a fresh page. We did it together and we agree to try this for a week and see what we think. Thanks for the listen, Tina
Thank you for putting this up. It has put a new perspective on TN. I realize now how you all must feel. Thanks for the reality check.
I’m new to this - was just diagnosed after a horrible 24 hour bout of pain. Does it ever go away? Medication makes me feel drugged and dizzy - can’t work this way on a daily basis. I’m thankful to have people to talk to about this.