hi all,
i think i just need to have a vent im feeling down in the dumps at the moment, i feel like no one understands what i am going through except for everyone here i guess it comes down to the fact that just because people cant see that there is something wrong with us they dont believe us they think we are making it all up! anyways just need to get that off my chest

low pain wishes to all
melina

Its frustrating that people don't "get it" and sadly I think the only way they can is to be close enough to us that they see what it does or to have it themselves. Take care and (((((((((((hugs))))))))))))

thankyou, i just wish they could experience what we go through everyday and they would perhaps have sympathy for us, but thats never going to happen, not that i would ever wish this illness upon anyone it is an awful illness to have!

I am so sorry you feel bad. I don't even know where my business is headed. I get so tired of everything. I am not very reliable now you know?

I am sending low pain and comfort to all of you. Living with this is hard .It controls so many parts of our lives. what we can eat how hot it is , how hard is it to chew... the moving air on our faces the pressure with the weather and the temps... the bright sun light or light in genral the sensation of touch, kissing chewing talking brushing teeth, washing face,... the meds and their affect..... the list is so long it is not funny. not even mentioning how others act treat us. including doctors who sometime think we are looking for a fix ,an addict.
It takes quiet a bit of time to be able to deal with it all and learn to live with it, accept it as best we can ..yet all the while we hate the hell out of it each and every day. and we try to be the same person to everyone in our lifes. Try to hide it and play with our kids . we try to let other "in" try to explaine what its like, but most always No One really dose get it and after awhile one grows tired of trying to explain or tell. It dose stink ...that is using post friendly wording.
But I find the comforting side is being able to connect with others that are dealing with this. It is good to come here to Neuro Talk and be able to vent, ask questions, get info and find support make new friends be it they live in the computer... it is still good to connect and know your not alone.
lets all post one or two things we hate the most about T.N.
1.-- I hate how the cold affects me. cus it makes me a prisoner
2 I hate when a big storm comes and the pressure change . cus It takes me as its prisoner
Now your turn...



low pain and gentle hugs to everyone.
PEACE
BMW

I hate not being able to enjoy myself and go out with friends!

i hate the fact i am putting on weight from my medication and cant excercise

i hate not being able to work because of this stupid disease and not knowing what is goib to happen next and when the stabbing electric shock pains are going to happen!

i hate the fact that my pain is always there 24 hours 7 days a week!!

but i love all of you guys for being her for me!!

I hate having to take meds all day, every day, and the panic I experience if I don't have them.

I hate always being in pain, 24/7.

My list could also go on, and on, but I'll leave it here.

nice you two.
lets try to add a couple things each time we are haveing "one of those days" when the monster is really ugly and the rest of the world just dose not "get it" . when we are feeling down days and we need to vent.
Taking medication and suffering the side affects seems to be a huge one. and one I am blessed to not have . As I dont take meds. and that makes me wish so much what works for me was available as easily as each and every medication.
I guess that is one of my biggest peeves with the gov and medical field. but lets not go there...


lets keep this thread going with what we hate about this... as we know each day it can be a different thing that has us feeling "down".

I would just like to wish you all more pain-free days, and more strength to get through those really bad days. I don't have TN, but some know I have ON...and I have my dark, pain-filled days too...and the Winter weather here in Aus. isn't helping things right now...so, you could say I hate the freezing weather! lol
Best wishes

~Jaime~

hello fellow aussie friend,

i am from adelaide i didnt think there was anyone from aus on here, the weather makes mine play up too i have bilateral tn an oc tn as well, low pain wishes to you too!!
Melina