How do we come to terms with it people? I am sat here in my living room and Ive been awake for hours now and its only 5.30am. I have to wake children in an hour and get them ready for school, walk the dog, visit my folks, prep dinner, take eldest daughter to orthodontist app..bla, bla
All of this a few hours uncomfortable sleep after a difficult evening spent doing something which started out as fun. Last night my children and I went bowling with my sister and her new partner and all the children. To begin with it is awkward being around someone new as they are not used to my quietness and pain. Then we start to bowl and for some supid reason I have not planned ahead and worn something appropriate like tshirt jeans and trainers I opted for my clothes iv rushed around in all day including the stiletto boots!!!
I forget how different I am. I felt so self conscious and nervous bowling with all the lights. I am a naturally bubbly person my reaction to all things is to laugh loudly and be generally stupid but last night I found my normal confidence gone and I didn't know how to behave.
The evening felt complicated. Anyway I tired quickly then once the game was over the children wanted to use the gaming machines in the bowling complex and then it came a crushing stabbing pain to my ear which caused me to crouch behind a pillar yelping dropping my daughters bowling shoes she was shoving into my hands asking me to return them to the desk.
I had to wait outside in the pouring rain to avoid the lights and noise and allow my nerves some relief. I never got to say goodbye to my family I just waited for the kids to finish their game and my sister sent them out.
What has happened as I look back at photographs from just 12 months ago?... Medication and pain limits have reached a peak and very quickly life looks, feels and is very different.
This will be ok though I do have complete faith. There will be an answer and life will return. I will get through it all I know and am sure.
Hi Helen, this is the question that I am sure many of us TN sufferers ask ourselves. Thanks so much for sharing with us what you are going through. I find that for myself I have to keep the environment as low key as possible when I am suffering pain attacks. Worse case I just have to be left alone in a semi dark room to nurse my pain. But I am in the phase of life that allows that which is different than yourself with kids! Our society praises the outgoing activity and the bubbly personality but I noticed that I found some joy in being quiet and more reserved. There is a joy to just watching and listening to those you love. I notice that when I could not speak due to the pain and I took my husband to my doctor appointments I had a piece of paper that told people about my condition. This relieved me greatly and everyone was so kind. So maybe if there was a way for you to allow those around you to know of your condition. You deserve for your fun time to be controlled in ways that make it OK with your condition. Maybe you could think of it as a measure of your self-esteem to set parameters in your environment. Just some thoughts. I am struggling with the same questions as I watch my life change. Thanks so much for sharing. Big Hugs! Tina
Oh thanks Tina. Its just a difficult condition whatever time of life I suppose. My girls are 11 & 7 and full of beans! I am 37, Ive had this condition for 3 years. It gets worse with every passing year I think x
Helen, I know exactly what you mean about changing! I was diagnosed almost two years ago, but fortunately for me, my doctor started me on gabapentin quickly and it was very effective for controlling my pain. After a couple of weeks, I returned to my life as completely normal. Then about 5 months ago, I started have terrible anxiety and was diagnosed with depression, and finally about 2 1/2 mths ago the gabapentin quit working to control my pain almost overnight. (I discovered that the anxiety and depression were a result of the gabapentin becoming ineffective.) I tried oxycarbazepine (or whatever it's called) and had a severe allergic reaction so had to immediately stop that and live in excruciating pain over the weekend until I could see my doctor the following Monday. My doc switched me to a low dose of carbamazepine and referred me to a fantastic vascular neurosurgeon, who increased my dosage.
It mostly takes care of the pain, probably about 90%, but I don't feel like I have been able to return to my life as usual, and honestly, this new medicine makes me SO TIRED, I can't even think about increasing my dose again! My stamina is greatly reduced, and I, like you, still have kids at home. I can hardly wake up in the morning, never mind keep up with my "beauty routine," I've been late to work repeatedly over the last two months. On the weekends, all I want to do is sleep! My husband tries to be supportive, but he doesn't get it. Just go to bed earlier, exercise more, he says. I feel cheated and I feel like my kids are suffering, and I want them to have better than a mom who can't get out of bed! I wonder if this is the "new norm" and I should get used to it. I used to be always on the go, volunteering with my church, chaperoning youth group field trips, doing things with my extended family, and I loved that life. I'm not ready to let it go yet - I don't want to live an "old" life at only 44 yrs old!
This past week, I have felt more energy and had less shooting pains, so I am hopeful that perhaps I can return to most, if not all, of my life as it was before TN. I pray so, and I will pray that you will be able to, also!
I'm not sure that we ever come to terms with TN. For myself, I've cut my life into minutes & hours & try to look for moments of happiness, comfort, etc. Look I've been able to read for 10 minutes! Wow, I slept all night! I look for things that can make me smile (internally as it hurts to smile!). The antics of my 2 dogs & cat who thinks she is a dog are wonderful distractions.
I try not to be hard on myself...I used to measure a day by what I accomplished. Now that doesn't work very well unless I want to get really depressed. I realized that my biggest accomplishment is living each day with this absurd amount of pain and I am still doing it!
I explain what I have & what might happen if I am out somewhere and have a pain spike. While I tend to be a quiet person, I've found that saying a little bit about it up front can help tremendously when the pain does hit. It is invisible & if I say nothing then people tend to freak out when I suddenly rush away or ball up in a corner.
And, bravo for you! Going out bowling?!?! I could never take the noise or the many things going on all at once; I would have collapsed after 5 minutes. You lasted most of the time!
Please remember that you are doing the best that you can with what you've been given. We cope a baby step at a time & that is how we go on each & every day.
We & I so very much understand and are right there with you.
The only way I cope with the uncertainty and fear that comes with this is to believe that anything bad that happens to us God can and will use for good. Maybe we will be more compassionate people, or more forgiving. Maybe we will live with gratitude and enjoy the painfree days as a wonderful gift. Maybe we will awaken to what is really important and let the small stuff slide...
As for dealing with the pain--I don't know--I am at the beginning of this journey and the tegretol has worked so far...but I know what a wreck i was before i was diagnosed and how incapacited physically and emotionally. With all the med and surgical options I can only hope and pray we all can hold on andfind a way to live well until a cure is found!!
Helen,I think you are quite strong and brave to be even attempting an outing like that.When i'm having bad episodes i refuse to try any type of outside the house activities and when at it's worst,don't leave the bedroom any more than is absolutely necessary.It makes it hard for all my family to understand,and very difficult for my wife i know.I'm sure you did it for the kids and i sure admire you for it.Trying to talk to people and smile,hearing loud noises,and being in bright lighting with no place to get away and just relax.It sounds so simple to those that don't understand what we deal with.
If you're not getting rest and sleep that is just compounding things as you know.I hope you find some relief very soon.At least please get some rest.My Gamma Knife treatment has apparently worked.But my TN has completely gone away as long as a year and returned worse each time so i'm still skeptical,but trying to enjoy every pain free day.Have you looked into the PNS treatment?Maybe it's not done in G.B.?That will be my next option if needed.Best to you,Don
Dear all. Thank you my darlings how kind of you all to say these things about me and let me into you worlds a little. I don't have the option not to go out I am way too young. I often feel tn has turned me into a middle aged woman when previously I felt locked at around 19!!! If someone had told me before I left my husband 4 years ago that a year later I would be struck down with tn and no partner to help, would I have still done it?!! If we know what is ahead would we still live as we used to take for granted? These are things which float into my head often. This is the privilege of being alive and living in the west Im thinking.
Before I left my husband I had been treasured and loved every day of my life. First by my parents and without a break straight to my husband. Blessed. I wasn't madly in love but loved him deeply. I lived for 10 years married with permanent guilt that I couldn't return the love he showed me because I didn't know how to feel that deeply. Then I did fall in love and it wasn't with him, I was crushed and didn't understand why not and I still don't really but I decided to free him and me to be with the people we deserved and not locked into a marriage which was stifling us both. He is with someone new and about to marry again and seems so happy. She seems to give him what he needs in a way I couldn't. I am learning how to cope alone which is the life I genuinely felt I deserved. I have learnt so much about myself since leaving, things I never knew before and I can look my girls in the eye now when they ask about love.
Thought Id tell you a bit about me. Its a bit long winded but sometimes its helpful to know where we come from.
Except for having to raise kids still, I can relate.
I was up from 1:45 until 3:00 am this morning then woke up with pain. I am still just trying to get it under some form of control.
I have become a "shut in" more or less. I use to love to bowl!! It's been really windy here and I'm sure that's what did it, like my arthritis my TN knows when bad weathers is coming. I can't tolerate bright lights or high pitched sounds either.
My older kids have not liked it when I've had to cancel things, I've tried to explain this pain to them and they just don't get it. Now that I don't have a car anymore I see them more because they pick me up as where before when I had a car, I couldn't drive in that pain not to mention the high doses of pain med!!
I really don't know how you get by with having to do things despite the crazy pain!!!
Just from this site I realize how blessed I am that I didn't get TN while my kids were still living at home, that would have been way worse than living alone, which I thought was pretty bad, now I'm thinking that living alone might just be a blessing in disguise!
I have had TMJ for what seems like a life time and the kids were at home then, but I could still function even though it hurt even with meds but I had no idea what pain really was until I got the relentless monster of TN!!
tacocat said:
The only way I cope with the uncertainty and fear that comes with this is to believe that anything bad that happens to us God can and will use for good. Maybe we will be more compassionate people, or more forgiving. Maybe we will live with gratitude and enjoy the painfree days as a wonderful gift. Maybe we will awaken to what is really important and let the small stuff slide...
As for dealing with the pain--I don't know--I am at the beginning of this journey and the tegretol has worked so far...but I know what a wreck i was before i was diagnosed and how incapacited physically and emotionally. With all the med and surgical options I can only hope and pray we all can hold on andfind a way to live well until a cure is found!!
I did read them yes hon thank u. I’ve read lots about facial pain this eve to try and remind myself of how all of this feels underneath the fog of medication. It ties u in knots. I’m going to call my doctor in the morning and talk this new medication over with him. Its 4 am here and I haven’t been to sleep yet. X