I’m in a very dark place right now and have been for the past ten days. I feel I’ve given up so much to this disease and every day I live with excruciating pain.
My husband tells me to try to remind myself one day everything will be better, but I cannot see the light at the end of the tunnel.
Not after so many medications. Not while I’m stuck in a position where we can’t afford MVD. Not like MVD is a cure all. Not when my doctor is painting me out to be something I’m not. Not when I feel so sick all day because of meds and mentally slow. Not when my kids beg to do something and I’m calculating my risks for an attack. Not when I can’t brush my teeth or put on makeup with an attack. Nor how I know eating, wind or touching my face affects me.
I have so much to life for and would never leave my two beautiful boys or my husband or my only brother. But I understand whole heartedly why this is called the suicide disease. I’ve promised my counselor that I’d reach out in the event the thoughts cross my mind - I see her tomorrow.
Depression is common with this disease as with any chronic pain disease. I’ve just had bad experiences with antidepressants where the exacerbated my depression.
Where do the lost go when they cannot find there way?
I can tell you where I go…
I look into my daughter’s eyes (aged 16 & almost 21) I picture all the future milestones I don’t want to miss.
I wrap myself in my husband’s arms for a few minutes and just cry.
I go to bed and dream of better days ahead and respite from the pain.
I step outside of my prison ( my home) and feel the sun shine on my face.
I listen intently for the birds chirping/singing and take a deep careful breath.
I put on some music and try to get lost in the melody or lyrics…
When I’m completely, utterly overwhelmed with the thought that "this will be my life of suffering and isolation forever " I change my thought. I distract myself with something, anything…
I REFUSE to accept this.
I refuse to believe as hard as it is most days. I just plain refuse that thought.
I hold out hope that a cure is coming, I don’t think about how long that might take, I just keep telling myself it is coming.
Does this work for me?
Sometimes…but truthfully not always…
I’m a smart woman, I know where I’m at, I know there’s not much if anything left to try, my future looks bleak…that’s not being dramatic, it’s the truth.
I take each moment as it comes. I can’t handle more than that.
I’m in the process of looking for a counsellor, I think it’s a tool in our survival kit that’s underused.
We’re all unique Kismet, ultimately we must find the little things that help us get through the moments of despair.
For me, it’s a continuous learning and searching for ways to “survive” not just the pain but new ways to cope…
Sending you Love, Light and understanding as I truly “get” what you’ve written…((( hugs ))) Mimi xx
Please try prayer and meditation. Try praying to saint Marianne Cope. Also have you tried acupuncture or reiki or massagetherapy. I will pray for you. I can truly relate to your helplessness. I tell myself this is my cross to bear and i will get through this! And you can get through this too! Hang on!
kismet - i know just how you feel. i've only been dealing with this since january and it's easily been the hardest thing I've ever dealt with. for me, doing what mimi says and taking each moment as it comes is the best (and really only) way to handle this. if i start to think too far ahead into the future, i'm doomed. and the truth is you never know what the future holds. not even before any of this started for any of us. just try to focus on the little things and the good things and the distractions.
I’ve had ATN for years. It seemed each year I gave up one more thing that I loved because it triggered, or might trigger, that crippling pain. It seemed that it was eating up the ME I wanted to be and remembered being and was leaving me as something or someone else. I have recently decided I was not going to let that happen. I began experimenting with ways to get back out in the wind (safely) get re-energized, and get back in the sunshine (w/out quitting meds that make me sunburn). I feel so invigorated…like I am striking back. I didn’t strike back at all things at once, but just bit by bit. And, on the days when I can’t strike back…I distract myself and know that maybe tomorrow or the next day or the next I’ll go back to striking back and reclaiming at least a piece of who I feel I really am. Breathe deep. Seek Peace. Reach out to those who understand.
I've been there more times than I can count. Some how, one day the clouds break open if just for a day or two to remind me that there is something there, sometimes all I can think is what it would do for others if I were to leave. I can't hurt the one's I love, to freeze time forever for them, in my mind it just not fair. And so I hang in for one more day, week, month. I try to do work that helps others and gets me out of my "one-sided mind". Moderating on this site has helped connect me with others in need. I volunteer for the humane society and now have a colony of feral cats that rely on me to come feed the and give them water and a safe haven... I never want to let them down. It's easy to give up on yourself, but when others depend on you... it helps take the self destruction out of the equalization. I'm glad you feel comfortable enough to reach out to others. Better days are always just around the corner.
Kismet, I’m thinking about you. This disease throws us many curve balls and it can be hard to swing every time. You do have so much to live for, Your beautiful family that I know loves you to pieces. And you always have a great support system here at livingwithtn. I have to say, Mimi said it best. I cried when I read her reply. You are strong Kismet! You can get through this, I believe for all of us it will get better. We have to keep fighting and hoping for a cure. Sending you loves and hugs! ~Erica
I feel so humbled by what you all have said. For you to take a moment of your time to comfort or give upon your knowledge pulls at my heart strings.
I know most of you have given up the same if not more to this disease. The strength in you all is inspiring. Your willingness to give when so much has been taken from you is incredible.
I stayed deep inside my dark place up until Saturday. My eldest son took me to a movie and dinner. He revealed a secret to me that hugged my heart. He told me that he had asked his class to write “get well” cards to me. I chalked up his inquisitiveness about my disease two days prior as him wanting to know more about it. My son, who turned nine in January, always has a way of surprising me with his ability to see way beyond his years. I could never leave him. I could never give that power to this disease.
It is the little moments. The moments that passed and those that have yet to come. Who is to say what tomorrow brings? Who is to say that light we yearn for isn’t just a few more steps down that tunnel? Sometimes it’s hard to get out of our own way. Easy to become entangled in the hopelessness when we all fight a disease with no cure. Be that as it may there are people with TN in remission and pain free for years. How my life is now isn’t the end of my journey. It’s not the end of yours.
I cried reading your replies and I will forever know the special kindness that maybe only people who have suffered know.
What a wonderful sign that you never know what lays just around the corner. You are a perfect example of what happens when you reach out and open yourself to the unknown. Thank you so much for sharing is reminds me of why I want to be a part of this special group.
Among other things,you wrote "when my doctor is painting me out to be something I'm not." If you'd like to talk about that further, please feel free to expand on that dimension of your experience here in this thread, or more privately by site or off-site email. I can be reached at ■■■■■■■■■■■■■■■■■■■, or friended here for site email. I have written in several Internet venues about the inappropriateness and dangers of psychosomatic medicine and the "it's all in your head" label. Apart from that, I have 18 years of experience in supporting chronic face pain patients in social networking venues. I'm happy to add my voice to those of others here who have expressed their care and concern for you.
I was at the end of my rope, until my doctor prescribed a new medicine for me and things got a whole lot better. So… one day at a time truly is best for us. You never know what’s around the corner!
Please continue to "dig deep" for a reason to move forward. If your depression or thoughts become suicidal, please go to your nearest ER or call 911. Again, please go back to the basics to what has worked in the past. You are the only one that can employ your coping skills...In my thoughts and prayers
Hi Kismet
I am just reading this now as you are coming out the other end of your crisis. So glad you made it. What a wonderful little son you have- he took some of your load. Sometimes that is more than enough.
I think the lost come to places like this forum to be somewhat found. Know that you are not alone---because TN does make one feel alone, isolated. It is for many of us the pain that does tend to leave us gripped in fear at times, afraid to go out, or enjoy those special moments, and folks don't see this pain, most of the time. I get where you are coming from! I have been on this journey with TN for 10 years--many treatments, a failed MVD, many medications, unable like you to take anti--depressants. I have had to make some strong choices---and it is not easy to be strong with this huge pain monster. I have a powerful faith, and I pray for strength, when I don't think I can stand those bad pain moments. I also do like others--I go outside, sit in the sun, look at the flowers, listen to some soothing music, and many times I read (reading really helps to take me away from the unpleasant moment--doesn't stop the pain, but somehow it makes it a little more bearable). You still have many special gifts to bestow on the world---despite this medical pain----perhaps if you just don't plan too far ahead, and I would imagine your family is very loving, and will understand, and compensate, you can find those special moments where you can hopefully enjoy your world despite the pain of TN. I know it isn't easy, but each little moment is what counts. Hope this helps. All the folks on this forum really want to lift you up, and I will pray that God will hold you gently in his hands, and give you strength. Just a little side note---doctors should be very encouraging and understanding for folks with this condition---just a thought---could that situation be bringing you down a bit also---and might you want to rethink that picture, if possible. Be kind to yourself. Sending warm thoughts for low pain days.
he took some of your load. Sometimes that is more than enough.