So many days end with me in pain and crying my eyes out. The tears pour out as I think about all of the things I wasn’t able to do today. My son toddling over to me wanting to be picked up. Him trying to kiss me on the cheek while I have to shrug away. He doesn’t understand why he can’t kiss me, he will never be able to understand the pain that plagues his mama. My boyfriend trying to hug me, but again I have to push him away. The touch of his cheek on mine is too unbearable, even if I’m not In pain at that moment, his touch could be the one that pushes me over. My friends at work laughing at a joke as I sit in silence. I know what they’re thinking, what’s her problem. I see my dad is calling but I can’t answer the phone, just saying hello is out of the question tonight. Eat some dinner? Forget it. Brush your teeth? Probably not tonight. Try to snuggle with my little boy as he falls asleep, reassure him that mama loves him no matter her pain. Lay in bed and pray for a better tomorrow, but knowing that it most likely wont be. Another day playing with meds and trying to not give in to the sadness that surrounds me.
I'm so sorry for the pain you are in and having to endure...And how you feel you are a horrible mother...You aren't a bad mom...You just have a horrible condition ...Sometimes it is a condition that no one understands...I don't have children at home so I'm fortunate in that respect...Your son more than likely is a lucky little boy to have you as a mom..I'm sure you provide him with everything he needs especially LOVE.....Please don't feel bad...Have you talked to your doctor/neurologists to maybe up or change your meds..?? My teeth hurt something fierce today and I called my doctor and was told to up my dose of amitriptyline... I hope you find what meds work for you...Please do not give up..Your son still needs you...
((((((((((((hugs))))))))))))
Hi Mainer,
Oh I know what you’re feeling, I wrote a post last year about it…
http://www.livingwithtn.org/forum/topics/living-with-tn-and-the-emotional-side-effects?id=2413731%3ATopic%3A235169&page=1#comments
The emotional side effects are so difficult to cope with on top of the pain. I think for me I’ve worked really hard at cutting myself some slack…I still get frustrated and feel so bad when once again I can’t meet up to my expectations or feel like I’ve let my husband, children, or friends down. BUT lets be honest, we are in some serious kind of pain that is hard to get a handle on and we have no control.
Our children are resilient, so please try not to feel too guilty when you can’t do the things you used to do. Explaining that you have an owie and showing love in other ways will allow your little one to feel ok.
It can be overwhelming, the sadness, despair. But you have to try so hard to believe and hope that tomorrow will be a better day.
Last Monday on my birthday, everyone was calling ( we have most family and friends that live far away) and I couldn’t talk, at all without the shocks starting…it sucked. Couldn’t talk to anyone!! Most people don’t understand either…
In any event, you are not alone, I’m so hoping tomorrow is a better day for you.
Huge (((( hugs )))), Mimi xx
Hi Mama,
I understand what your feeling. Just do not beat yourself up soo much. This is a monster of gigantic proprtions. Its tenacles reach beyond our self. Its probably more difficult for you be ause you feel so helpless. Sounds like you have a great boyfriend who understands. Its okay to have others to lean on. As Mimi said our children are very resilient. Right now need to try and get meds under control in attempts to keep the monster at bay. Tweeking the medication may be of help to you right now, call your neurologist and let him know whats going on. Maybe and increase of change of meds per your doctor. When we are in this type of pain crisis its so very hard, it consumes our total being. Its hard for outsiders to het the wrath of this pain. Has surgery been an option for you yet? Not sure if you have had anything, just throwing this iut there. I will say a prayer for you Mama, we are here fir you to vent and seek support. Again please do not fret and beat yourself up. Thoughts and prayers for you! Maybe reaching out for some help right now can help relieve sime of this guilt you feel. Its okay to ask it does mean we are weak. Maybe your Mom, Aunt, cousin or friend. Having a sitter for the little one so you can rest for abit might help. This is somyou can get your wits about you. We are so afraid to ask but its okay
My Best
Joannexo
lillyh said:
I'm so sorry for the pain you are in and having to endure...And how you feel you are a horrible mother...You aren't a bad mom...You just have a horrible condition ...Sometimes it is a condition that no one understands...I don't have children at home so I'm fortunate in that respect...Your son more than likely is a lucky little boy to have you as a mom..I'm sure you provide him with everything he needs especially LOVE.....Please don't feel bad...Have you talked to your doctor/neurologists to maybe up or change your meds..?? My teeth hurt something fierce today and I called my doctor and was told to up my dose of amitriptyline... I hope you find what meds work for you...Please do not give up..Your son still needs you...
Thank you Lilly, some days are just much worse then others. Thank you for your words of encouragement. I feel so blessed to have found this website. It is truly a God send. I give my son all the love and attentionI can when I’m able to, I just wish it was more often. I have an appointment with my neuro at the end of the month. In the meantime I’ve been adjusting my meds as she told me to. What type of tn do you have Lilly? I was given amitriptyline early on in my diagnosis and never really felt like it did anything.
Mainer said:
lillyh said:I'm so sorry for the pain you are in and having to endure...And how you feel you are a horrible mother...You aren't a bad mom...You just have a horrible condition ...Sometimes it is a condition that no one understands...I don't have children at home so I'm fortunate in that respect...Your son more than likely is a lucky little boy to have you as a mom..I'm sure you provide him with everything he needs especially LOVE.....Please don't feel bad...Have you talked to your doctor/neurologists to maybe up or change your meds..?? My teeth hurt something fierce today and I called my doctor and was told to up my dose of amitriptyline... I hope you find what meds work for you...Please do not give up..Your son still needs you...
Thank you Mimi for your kind words. I do find great comfort in the responses from others. For the first time in 5 plus years, I have people who understand what I’m going through. I only wish the other people in my life could understand this horrible pain. How do you explain a crippling pain that can bring you to your knees but no one can see it. I mean I’m not going to die from it, it can’t be that bad right? Yeah… If only that we’re true. I’m sorry you had a tough birthday. It must have been so frustrating for you.
I hope you have a pain free day today, one can hope anyway.
Thank you Joanne for taking the time to respond to me, I really appreciate it. I haven’t had any surgeries yet, it hadn’t been too awful until recently. I was having a lot of time in between episodes, but that seems to be changing.
Mainer,
I have Atypical Odontalgia..My bottom teeth hurt horribly with throbbing and shots of electric currents! Sometimes the pain is firing all over my mouth, in my gums, and cheeks...Ihonestly thought I couldn't deal with this pain everyday of my life and really thought about ending it all..but I love life and I have my grown children and grandsons, and my mom needs someone to care for her so that keeps me going..The amitriptyline works mostly for me..I am on 30mgs..If I have pain I take ibuprofen 600 which dulls it enough to kinda ignore the pain..My daughter has small fiber neuropathy and she is on tegretol...I guess it is all about finding the right medicine combination for your self..There is a combination out there that will work for you..I hope your doctors find it for you soon! Take care.....
.
Hi Mainer--
Just saw this post though it is kind of old-- hope you are doing better...
I have been recently diagnosed and was thinking about how I believe God uses everything for good-- even the really nasty The trial and trouble stuff that happens to us...
I have to believe this will make me into a more kind compassionate person -- someone who values the beauty in every (painfree) minute of life-- it will help me to set my priorities and focus on what is really important--
I believe there is a way for us to live relatively painfree-- just the right combo of meds/treatments-- but in the meantime I am trying to find a way to get through this and be better-- not bitter and angry--
I hope this does not seem pollyanna to you-- this is from a raw open wound kind of place-
I am not one of those crazy Bible thumpers--but going to God for help and some verses in Psalms have given me lots of comfort. I never feel like I am walking alone-- even though so often I feel that people don't get understand !!
Let me know if you want me to send you some of the verses that are really good for me!!
;-)
I'm so sorry, and I wanted to write and say I understand. I often feel this way too, that I am failing as a wife, mother and daughter. It kills me to not be able to pick up my 2 year old and snuggle all the time. I've missed out on other family events, both good and bad, because of the pain. I can't remember the last time I had the energy to make love to my husband. I do understand, and please know you are not alone. This is a wonderful site to converse with others, and if you ever need to talk please send me a message. You are not a horrible mom, not at all. It's hard to not be depressed with this much pain, but this is a wonderful group of people who understand and can provide support and advice.
I am not church-going person, however, I too believe in God. I do not pray on a regular basis, and often wonder why he is challenging me with such a miserable disorder. Often my frustration gets the better of me and I just get mad!! I want to know what I did wrong. This of course usually happens during my periods of pain. When I am feeling better, my mood of course changes. Please feel free to share some verses with me, I am always looking for hope.
tacocat said:
Hi Mainer--
Just saw this post though it is kind of old-- hope you are doing better...
I have been recently diagnosed and was thinking about how I believe God uses everything for good-- even the really nasty The trial and trouble stuff that happens to us...
I have to believe this will make me into a more kind compassionate person -- someone who values the beauty in every (painfree) minute of life-- it will help me to set my priorities and focus on what is really important--
I believe there is a way for us to live relatively painfree-- just the right combo of meds/treatments-- but in the meantime I am trying to find a way to get through this and be better-- not bitter and angry--
I hope this does not seem pollyanna to you-- this is from a raw open wound kind of place-
I am not one of those crazy Bible thumpers--but going to God for help and some verses in Psalms have given me lots of comfort. I never feel like I am walking alone-- even though so often I feel that people don't get understand !!
Let me know if you want me to send you some of the verses that are really good for me!!
;-)
Thank you RueAnn for your kind words. It sounds like we are in similar situations. My son is almost 2 years old as well. It is so easy to be consumed with depression when you are dealing with such miserable pain that other people don't understand. I would love to chat more with you. I am always looking for friends that understand what I am going through. It certainly helps everyone to talk it out.
RueAnn said:
I'm so sorry, and I wanted to write and say I understand. I often feel this way too, that I am failing as a wife, mother and daughter. It kills me to not be able to pick up my 2 year old and snuggle all the time. I've missed out on other family events, both good and bad, because of the pain. I can't remember the last time I had the energy to make love to my husband. I do understand, and please know you are not alone. This is a wonderful site to converse with others, and if you ever need to talk please send me a message. You are not a horrible mom, not at all. It's hard to not be depressed with this much pain, but this is a wonderful group of people who understand and can provide support and advice.