I know so many of you are going through so much and sometimes I feel like I am just feeling sorry for myself so maybe venting to those who can understand will help.
Last week, we had snow and my son wanted me to play with him. Of course, I could not - way too cold - he cried. Luckily, he has friends this year in the neighborhood so I was happy making hot chocolate hourly and running the dryer like crazy. Then, this past weekend I attended my daughters cheerleading competition. I was prepared to hurt because they are so loud. People screaming, the music. But I wanted to support her. However, 20 feet away from me were 2 men that had the most enormous cow bells that they beat on with drum sticks. Seriously. I don’t think I could have handled that without TN. So everytime they did their “thang”, I had severe shooting pain.
I finally had to be taken down a notch on the Tegretol, so my Neurologist added Lamotrigine. I don’t know much about this drug, but hope it helps. He is also sending me to a Neurosurgeon but I am not ready for that. I saw my mom go through so many surgeries with her cancer treatment, I have sworn it off. I think God is letting me know that I really don’t have control of things. My boss asked me to get out my crystal ball and let him know when I am coming back. I hate to say it, but I don’t know! Doesn’t he think I wouls tell him if I did? My mind is gone. I know Aleshia called it a Tegretol Typhoon in her head - I know what she is talking about.
Since I am more normal in my thought process than when I was on Neurontin, my husband seems to think I am well and he and my kids get frustrated with me when I hit that wall and cannot do anything else. What about them? This is the first time I have had to stop and take care of myself and they don’t seem to like it. They all laugh when I get everything screwed up, but I get so frustrated with myself and don’t always find it funny. I was an intelligent woman with a career and now am stuck at home and when I do venture out, I get lost driving to familiar places.
Thank you all for allowing me to vent.
Oh Debbie, i know how you feel, i have 3 children, my 9 year old son wanted me to go and play in the snow, we have had quite a bit this week, with another thick layer today…and no school for kids again. I couldnt go out and play and yes it did really upset me, who have i become?? i am a big kid at heart with everything i do but not anymore. The snow all fights, snowman building, snow angels...no more for ME. It doesnt affect anyone alse around me. Gardening…i love gardening…not anymore.
As for your family frustration…i too am having to take time to look after myself,alot of time. My husband seemed to find it difficult and frustrating to watch me going through something he cant see or understand. My kids still think mom should be doing everything for them..slowly over time i am able to do less and less. I feel like a useless burden. when i found this site i came across the blog entitledtrigeminal neuralgia for people who are the carers`…something to that effect. I read it and cried because it was able to describe what was happening to me. I then asked my husband to read it, it really opened his eyes to what i felt, what i was going through. I then asked my 2 daughters aged 14 and 16 to read it. Some of it has sunk into their heads, they are slowly, oh so very slowly (as thats the only speed they have apart from stop lol) It is still very frustrating for my husband to watch me go through the pain i am having, but we WILL get there. Debbie we are all struggling with the same problems and pain on this site, we all understand. You can allways give me a shout and we can do some venting together. Keep your chin up.
Sue
OH HONEY, I will say a prayer for you tonight as I do most days and nights. You and other moms like yourself, ya all are a pretty special kind of mom GoD has given you all something very special. I don't know what it is maybe you all know or feel something or maybe ya all don't know either. I have said for the last 22 yrs "what in the world would I have done raising 3 kids by myself with tn2 and trying to work so they could eat.We would not of gotten by on my disability if my kids had not of been just grown. I was a nanny and housekeeper for 2 little boys.Which was very hard many times when I would have a bad flare up.It was good the 1 st 7 or so yrs then the 2 nd little boy was born in 1995 so I was a couple yrs into tn but on meds. Now starting to have more and more and more bad days. Lost my 1st granddaughter in the fall of 95 .That is about the time I noticed how close those ice pic stabs were together.By 98 I was getting much worse. My 1st grandson was born and my tn was on a rampage. I still had my great job which I loved so much.We were family amongst ourselves. I was on meds after meds nothing was helping. Tried tens unit didn't work either.I was missing so much work my daughter would go in my place when needed and if I could I would keep Austin because our other little guy was 3 and a little baby just rained on his parade.This is where you moms with tn have something we other tn er 's (wait) let me just speak for me, I DON'T HAVE! I believe the good LORD keeps something just a little special for certain people or situations. Wherever the need may make its self known.I loved my job and the boys all three of them we were family.We helped each other it still did not run smoothly more times then not. At times I had worked all day and did not feel well enough to keep Austin and as he got older he would throw a tantrum because he didn't want to go and play with the boys he hadn't seen grams all day so he was usually happy just to stay home and chill with grams.As the tn became more and more constant.I was missing work and the boys more and more it was getting even harder to just keep Austin and let Misty go to work in my place.I want to stop right there and say this you moms with tn are AMAZING REMARKABLE IN MY EYES!! It usually took 3 quite smart women.it took all three of us working together to keep 2 houses several at any given time at either house or both at any given time an assortment of little critters, Ya all know, frogs, rats, hamsters, fish, sea monkeys, the normal at both also cats, dogs, birds, guinea pigs. I think y'all have the idea they have to be cared for daily.Our days would often go something like this on a bad tn day.There is no way I can go anywhere I have had no sleep I 'he watched the clock almighty I hurt so bad I have had dry beeves for hrs.I need to take meds and try to go to sleep you know if I go to long without sleep it will only make the tn worse.Honey do you want to go in my place? Thanks, babe, now the next hurdle 2 boys are ok with the baby tagging along now lets see if we can get the baby to leave grama. Sometimes yes SOMETIMES NO! we do the best we can and I just made myself realize again and sometimes we just can't. It sounds ok to say it right then but I thought back to one of those exact days.it did not sound ok. I hurt so bad I wanted to scream, Austin was about 2 it was early evening, dinner timeish, Misty was going to watch the boys and I had said I would keep Austin so the boys would have more fun with misty. I had said yes days before I am sure.it doesn't. really matter.When one boy is 10 and one is 5 who wants to play with the 2yr old, that 's right grama! But she is over in the corner clutching her face, praying over and over GoD please help me! Misty had to go she said, "what do I do mom take him or leave him "Through tears I said, "Just leave him, love you and the boys, tell them have a good night without the brat child. That is one of our little family jokes.That's what I mean about how awesome you moms are. I had to call in reinforcement GREAT GRAMA REE!! it is s blessing we all live within 5 mind of each other.Tell me that's not special.GoD new right where to put us.He knew we would need reinforcement ally so he thought we might need to live close but not to close.it is just about perfect.I do kinds understand when you want and can't for your kids because of your tn. I am so sorry moms and moms to be that really has to suck sorry but I don 't know of a better way to put it.I am a grama of 3 girls 7, 10, and 12 and Austin 15 and I know how bad that can be at times.As a nanny I could always call in leave early or send Misty.I would guess many of you moms are doing it alone I sure hope you have a great support team of family and friends.I will pray that for racy of you tonight along with some pain free time to spend with your children and some mommy time to beable to have if only a few mins here or there for yourselves.I just want to say one more time before I get up out of here. You are each AMAZING WOMEN and if you can get through tn while raising children there's nothing you can't do.Take care of yourselves HUGS, Dawn