Giving in

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1

How can i not give in? TN has not only bought a pain that just can`t be real, but its also paved a very destructive path on its way so far ahead, thats all i can see.

For me - I dont go out anymore, just twice a week AND thats because i have to. I just seem to wander around in my dressing gown in a mist of drugs, fear and hate for myself and whats happening. I am supposed to be mom, nurse, friend wife, lover, teacher, supporter. How can i be all of these again to the fullest degree when i can`t live wth myself, when all everyone can see in me is pain and misery.

For my marriage - God only knows where to start on that one. TN has but a big divide between us, the wife my husband married has disappeared, sad, crying, angry, unsociable, UNSEXY, tired, drugged. It destroys me inside everyday.

For my 3 wonderful children (1 disabled) - i feel as though i am a bad mother, they have to do so much more for them selves and fo me. Isn`t this wrong?, impatient, sad, angry, crying, drugged… i hate my children seeing me this way.

Friends - What friends? they disappeared as my pain increased, false promises and help they never fulfilled.

My Family - my dad is in mid stage alzheimers only told a month ago. They need me more than ever but i cant leave the house or even speak sometimes and of course drugged.

I hate this life, i am more of a burden now. If i am pain free i am drugged, which makes me slow in response, i talk rubbish, forgetting words, mixing them up, stuttering. i am tired all of the time, i have no energy. i have had some real bad pain this last 2 weeks, went to do some house work yesterday, i was totally tired and breathless from hoovering and polishing. Thats not me!!!

I shake, stumble and sway like i have been on the lash all day and night. Every time i sit down i drop off to sleep, i burn myself with fags, coffee anything i am holding at the time of drifting. it takes me ages to type on laptop because my fingers won`t stop tapping.
Did i mention i cry?? and i cry and cry.
I get dizzy, i fall and stumble.

I used to take care of everyone, if anyone had a problem friends or family it was me they came to see, good olsue would help/listen. Where is my help?? Wheres my need of help and understanding??

My way of life or the TN way of life…it seems the TN way of life has over shadowed and overtaken me and is winning mentally, physically and sensory.

I am soooo tired of fighting.

2

sue,
i know just where your coming from,i feel exactly the same as you,all my so called friends have dissapeared but the wanted me when they had problems,all i have now is my 4yr old son who cant understand why mummy cries all the time ,a husband who cant put a foot right as i have turned in to the bitch from hell and a cpn nurse who comes weekly as im at risk of suicide,
life has changed so much sinse ive had tn,im on that many meds i have bloated in size and are fat ,so now im in pain ,fat ,unsexy,drugged up and a miserable bitch
im sorry i cant offer u any words of comfort only that u r doing the best u possibly can under the circumstances,could u go back to your gp for help? i cant as mine are so horrible
have u gone on the tna uk site,im on there and we all offer the same support and advice as you get on here,try it ,and see if someone can give u any advice or help
am so sorry u r suffering like this ,am sending you big hugs
love liz xx

3

Sue,
I was so sad reading your post. Sad b/c I understand and you wrote alot of what I think and don’t write! Yep, the friends come and go. How can they understand. They still get to run around, shuffle kids here and there. Do anything they want when ever they want, drive whenever, drink a glass of wine with out wondering if it is going to react with meds and kill them.
I am with you on the change in the married dept. too. It does change our moods, wanting to be touched *not touched, feelings of loss at the old us. I look like a tired, frumpy mom barely out of jammies, no shower in 4 days as of right now.
I hate having my kids seeing me laying on the floor, curled up crying. They are 2 & 4. They shouldn’t have to see this kind of pain. Too young for it. BUT, they do handle it much better than most grownups.
So you are not alone. I have made the dearest friends b/c of TN. They are email and maybe chat friends but they are steady and faithful and they understand days of no contact but worry when it has been too many days. But they understand every aspect of our condition.
I looked at your med list, it is hard to say this but even one of your meds could be reacting chemically wrong with you. I know when I took neurontin (gab) it made me absolutly manic and I only took 2 doses over 6 hours. I am talking sleepy one min, barely keeping eyes open and then flying high the next, foggy vision, heart beating like crazy, sad, crying, OCD. This was just after 2 doses. I know it is hard to try to find out which medicine is creating more of a problem than it is helping. You’ll have to decide if you want to try that or not with your doctor. I just wanted to mention that b/c I think I would have died if I would have stayed on that one even for 1 more day.

Just my thoughts. My heart goes out to you. I am sorry you are being stretched so thin right now.

Write any time.
Sincerely,
Stephanie

4

Reading your posts (all 3) brought tears to my eyes and just makes me want to give you all SUCH a huge hug. I am so sad for you all. It gave me a good wake up call because I am only three months into this and can feel so sorry for myself and know that I am not nearly suffering as badly as you all. Friends - I think I am older than you 3 and gave up on many of my so-called friends already. I learned that lesson when I lost my mother. I am down to about 2 that are actually true friends, so try to think of this as an exercise of cutting out of your life what you didn’t need anyway. Your children will always love you and no, it doesn’t seem fair but they will ALWAYS love you. You are still there for them, maybe not as much as you’d like to be, but you are there. Neurontin apparently made me a crazy person, too. I cannot remember most of the time I was on it because it was like I was hammered 24/7, but my family shares stories of my wild mood swings. My 2 friends do, too. So, it may be time to have a discussion about that with your doctor. Docs don’t always get it and need to be pushed - I WANT TO TRY SOMETHING ELSE. Please know that we are all here for you. If you need anything that I could do, let me know. I can mail you anything you want, help you makes lists, or organize tasks that you could hire out, etc. . . for now, I will stick with prayers.

Love and hugs,

Debbie

5

I’m so sorry that you are hurting this much. I too understand this and these last few weeks have taken ahold of my mind now. I have now sought out a Nuero Surgeon in hopes of some miracle. I have been to a pain clinic and this doctor decided that stadol was not the treatment of choice for me.(even though it is the only thing that has helped with the real bad ones. He just kept putting needles in me(spinal epidurals) and he wrote my nuerologist and told him to never prescribe the stadol again. It has been almost 2 months now and I have now begun to drink, which I haven’t done in over 11 years and never to this extent. See they just want to keep giving me pills and they never work, they tear up my stomach. My GI specialist says that it probably worked best because of the route it was taken, which was a nasal spray. I had to go to my PCP and she said, that I didn’t need to see a surgeon just because of the headaches and the C6-7 disc expulsion with cord compression, and that she would not prescribe the med either, but would give me baclofen and ultram. They only help try to ward it off but when it hits, it is to late and there is nothing or no one that can save me now. The pain clinic doctor had put me into a study that I did not agree to and he told me that he will not prescribe any pain medicine for migraines. I have to keep explaining to them that it is TN and all they say is no you are to young, even though the nuerologist is the one who gave the DX. My kids have to see me go through this crying, begging, screaming episodes. It often happens at work and other doctors that I work with have tried to write letters on my behalf, but to no avail. It’s like if they do not see me in the pain, then they treat me as if I am lying. The doctors and nurses that I work with as well as my family know the truth. I am fine one minute and absolutely crazy in pain the next. The only sign I have that an attack will come, is that my left eye will water profusely and sometime that day it will hit. It’s horrible because I know I have to deal with it, at least thats what my PCP and pain doctor say. The Nuerologist say’s that he’ll prescribe more pills. I’m so sick of being the scientfic test rat. I want my life back, but I too do not know how much longer I can do this. This has been going on since December of 2007. I can only tell you this even though we want to do the unforgiven, we cannot! Even though our families see this, we cannot! Our children and families need us as we do them and it would be harder on them if we were not here. Our children need their mother’s advice and nurturing even if we can only give it in small increments. We are still there for them and that’s what matters. I think we all need to insist on figuring out how to get these doctors and scientist back in the field and find us a cure. Maybe they can’t cure cancer, but they are trying to find out how. For us we are forgotten. We must rise up and open our mouths about how we need help. This will take everyones mouths and effort. Power is in numbers. And quite frankly even though we can talk here about ourselves and comfort one another, no one will help us unless we stand together and make them see us. I know there has to be hope and I know that someone out there can find a cure we just have to make them begin studies and if we finght hard enough then maybe the government will give someone the grants to do it. Never give up. The good days or moments with our families are priceless and don’t let TN take that from us!

6

I can’t imagine that I can say anything that could make you feel better but I know how you feel and I hope you know you are not alone. We all may not be together in body we are all connected in spirit and some day we will all be back to our normal wonderful selves and we can all meet to celebrate feel breat again…someday it will happen.

7

I can’t add anything else. All of the previous writers have said it all. This entire group are in my prayers. Liz