Need Suggestions on How to Deal with Re-entry after Very Painful Times

General General TN & GPN (Old Site)
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Hello, thanks for this wonderful community. I am fairly new to TN having been diagnosed for just a few months. I just went through a very painful time with no eating or talking and could only drink liquids through a straw for 8 days. Now I think my medications have stabilized and I have had 5 wonderful pain free days.

But it is like I am in a fog and don't know how to re-orient myself. When I was in pain that was the center of my life. I lived second by second using every mental strategy I could think of to keep from despair and try to keep my water intake and smoothies down. I tried to think of ways I could make life meaningful with the pain.

The first couple of days I was just ecstatic being pain free. But now I feel like I have to get on with my regular life. I had just let so many things slide. I also feel like there is the shadow of when the pain may return. My question is what strategies has folks developed to learn to deal with the ups and downs of this condition? Are their strategies for transitions? Thanks so much. I appreciate your wisdom!!

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Hey msbluebells!

As you know from your reply to my post, I am new to this too!..so I probably can't offer much in the way of advice. Not sure if it is of much help but I can totally relate to the feeling you describe. I often have to "take my mind off things" because I am my own worst enemy when it comes to worry...lol.

I say try to focus on some "me" time...like do something nice for yourself..manicure? hair appointment? massage?

I would love all those things..lol. Sometimes I just like to sit and do word puzzles..although my husband finds them very annoying, so to each their own I guess! Oh how about maybe a painting or cooking class..maybe you can find a hidden talent you didn't know you had :)

Good Luck!

Jessica

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Hi msbluebells. That's wonderful that you have had these pain free days. The meds are working. Yay. While I'm not totally pain free, I'm very stable. What helped me is the passage of time after the worst of the pain. I needed to forgot just a little how bad it was. So, hopefully every day will be filled with a little less anxiety about it. Regularly do the things you love to do or that pampers you. Take good care.

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Hi!! I went through almost exactly what you did-- a few months ago when i had my first attack. I was in despair. Couldn't eat, drive in car, even talk at times... I was in a panic. Physically, emotionally--- just a mess. I read stories and info online that only made me more upset. Then the meds kicked in.... and as each day/week goes by without pain I have been able to at times just forget about it all. But to be honest it always lurks in the background...and sometimes i am just so fearful of the future... what has helped me is to arm myself with as much info as possible on treatment options, doctors, etc. so that I have a plan if things get bad again. I have also decided to do the things that matter to me most-- spend more time with grandkids and involved in the organizations/activities that I find most enjoyable/meaningful. I am trying to complete projects around the house that I have been putting off-- things that i have meant to do... I also keep reminding myself that many people have months to years painfree in remission-- I do not want to fill up painfree days with stress and worry about this ailment--maybe by the time it gets bad-if it does- there will be a new and better treatment... hope this helps... ;-) --tacocat aka cindy

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Hello Msbluebells

I don’t really know how to congratulate someone who has just been through eight days of their life focused on getting through an episode of intense pain…it’s a wordless experience. I wish you could read my face right now after reading your post but all I can do is reach out here on the forum.

Everything I have to say to you comes from my own experiences. My first attack came in the middle of the night on November 5th 2009. I have come to realize that I am never going back to my “regular” life. I am going for MVD in September and my neurosurgeon has hopes of helping my pain by 70%. I am scared shitless but I can’t face another winter without trying.

So First of all I want to say that Extreme pain events are extremely enervating - they can’t be cured by a manicure. You need to go Easy. Take it slow.

I rebuild my energy by restoring my physical space first, either inside or outside, it depends on whether I start picking up dirty underwear and dishes, or sticks and storm debris. Sometimes I shut out the world while I get “all my molecules pointing in the same direction”, i.e. - I start to feel some kind of inner coherence again. ( If I get going in too many directions at once I can’t get myself together.)

Getting into my studio is part of re establishing my sense of order as well. (Sometimes I can work through bad pain periods but not always).

Once I start to feel congruent with my physical space, I work on my “emotional space” and reach out to family and friends, answering phone calls, emails, etc. When I start to feel restored emotionally, I face the demands of the outside world.

Of course, that’s the optimal order for me. But life is not always dished up that way…

Eighteen months ago I couldn’t get any of my strategies to work so I borrowed my daughter 's electronic piano and started to learn a few basics and then I plunged right into a Bach piece. Somehow learning a new skill jump started me back into my new normal.

“Overwhelm” is always lurking there in the shadows as well as the fear of future pain. As you said, so many things slide. But you can approach the heap the same way you lived with your pain…one thing at a time, one moment at a time. Overwhelm can lead to just as much hopelessness as intense repeated pain episodes. So go easy and keep heart.

Bellalarke

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You guys are fantastic! Thanks so much. I realize from reading your responses really how big of deal this experience was for me. When I was dealing with it just in my own head it was like a part of me was making it up and discounting the experience. Like I was making it up that I couldn't eat!! One of my favorite things is eating!! Or not brush my teeth (yuck). This forum has meant so much to me. I am going to take the time to write a reentry protocol for me in both going thru pain and for the pain free time using your guys suggestions. That way I can reference it if/when I go through this again and not be so destabilized. The pain filled days had really brought me to one moment at a time. I was thrilled to get my first glass of water down because it felt like life or death. Now I find my self getting a little sloppy i.e. taking things for granted. It is a luxury I can ill afford.. Thank you, thank you, thank you.

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Msbluebells,
Excellent topic for discussion, one that has been very prevalent these last few months for me.
From September 2012 until my MVD this past April 2013, my excruciating TN pain became resistant to meds… Every day of those 7 months I was in horrid pain, adding or increasing meds to the mix, to no avail. Life as I knew it no longer existed. All my attention and what little energy I had was focused on surviving each moment of pain.

After MVD , there was no longer pain, so all the other emotional issues came to the surface…now months into my recovery from surgery I find myself learning to get to know “me” after the trauma…

I guess what that means for me is learning to understand why I react certain ways and accept certain things…
I used to be VERY social and bubbly, now I’m more hesitant, there’s a little anxiety being out and about now as for all that time suffering I was very isolated and alone.
I was very energetic and active before and now as a result of being sedentary for so long, my energy levels are low and I tire easily. What were simple tasks before are now not so simple.

But the one aspect of having uncontrollable high levels of pain for so long is that I have varying degrees of FEAR, fear of the pain returning, fear of not making the most of my pain free time before the pain returns…fear of what the future holds…
And THIS is a foreign concept to me as I WAS a very optimistic person, glass half full kinda gal. Now, I’m realizing I’m still very positive, but it takes an effort to silence the fears, I’m more realistic…it’s hard to find the gifts of having been in such excruciating pain for so long, but they do exist.
So it’s a choice everyday how I live, how much fear I allow to creep forward, I’ve given myself permission to allow myself to acknowledge the fear. It’s part and parcel of the experience.

All this to say it is a conscious effort to make my gratitude first and foremost and to be positive and to allow myself the time to work through all these new emotions and thoughts.

My re-entry is a process, I’m learning each day how to cope and how to live fully.
I’m also not looking into the future and I’m making a choice each day to live more in the moment.
All we can do is our best…I’m proud of how far I’ve come and I look forward to continuing my journey and learning as I go.

Huge (( hugs )), Mimi

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I have learned to take things day by day. At some points second by seconds depending on how bad a pain day it was. I’m do glad you have gotten relief from the pain. I try to learn and read up on TN as much as possible when I first got diagnosed. Accepting having any illness can be difficult but remember there stages of grief you go thru there’s no time limit or certain order you can go through. For me it was the river of denial for the first year I had tn. So I tried my best to be a normal as possible. As the it has become more difficult to control my pain levels I worked all the harder to be as close normal as one can get. I won’t lie and say its easy to do because at times it certainly was/ is not. I take my time with things now and move more slowly. Make plans for the short and long term, and try to look at the bright things and what having an illness has taught me and made me more appericative of. One odd things is I have made a few mottos to live by such as I have tn, the tn does not have me, and this only a stage and this too shall pass. There a bit like my own sitcom slogan, yes I know it’s total cheese but it helps. Helping others in need also has helped. This last year I have also had some not very nice thoughts towards other especially those whom whine or complain about ailments that they could have avoided and are easily treated, such as type two diabetes for examples. You’ll find some type of normalcie it just make take a bit. I’m not sure if this has helped you at all but I hope it helps a little. Have a great day and that is pain free.

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I'm thankful for this discussion to be brought up, because honestly, I never thought of what I was going through as "re-entry". But what you all have written has made me very emotional. See, I'm not so good at putting my feeling into words. Your responses to msbluebells are so similiar to what I'm going through. I was pretty much 'down' from January to May. The only thing I know for sure is that I can not go back to that place of pain I was in. I hope I know my limits if the meds stop keeping this under control. In the meantime I want to learn as much as I can. I wish I knew if I had a compression or not.

Thanks everyone and msbluebells, I hope your pain free days go on and on and on. Hugs

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MSBULEBELLS.....I am with Hope I never thought of entry or reentry times....When my TN started 38 years ago it was an 8 year mission to find out what my problem was and a frustrating time. There was no one to talk to because you didnt have forums like this great site. My best advice is to reach out and take advantage to all that is available. You can communicate here with others who know exactly what you are going through. Educate yourself and take control of your TN dont let it define who you are. I stopped enjoying the times that I was pain free because in the back of my mind I knew that at any moment it would be starting all over again. Unfortunately you have to push to make your life as normal as possible even when in pain. Hopefully your meds keep it under control but if not there are so many options out there for you to consider. First and foremost though is to make sure that you have a neurosurgeon/neurologist who has extensive experience in treating TN patients. Good luck and stay pain free..Ed