Sometimes I feel like I am two different people. The first person is the one that I have always been, the one I love, the one that everyone else knows, loves and relies on. The second I was introduced to after ATN moved in and ruined my life.
Somehow I am able to keep everything together so that things look normal from the outside. But what others' don't see are the days, weeks and months of my life that are lost when I am in the middle of an ATN flare. The pain rears its ugly head and completely takes over my life.
Most of the time I drag my butt to work, drop my daughter at school or take her to lessons etc, keep my house in order and meals served. How I accomplish that I have no idea. Then when 8pm rolls around and I tuck my precious girl into bed and collapse into bed myself...the moment I wait for all day.
If it isn't a number 1 on the list it just doesn't get done during those times. I no longer apologize for that. Those closest to me know when I am sick and they are the only ones that matter.
The effect that this disease has on my cognitive abilities is overwhelming to me. Sometimes, the toll that takes on my life is worse then the pain itself. I have learned to cope with the pain to some degree. It no longer makes me anxious...I know what it is and I know that it will eventually leave, or morph, or move. I know that I don't have cancer and am not dying. I know that it is simply my nerves sending signals to my brain. But, even with all of that, the pain is exhausting and all consuming. It takes every part of my being to process it and makes me want to collapse in a corner.
But life must go on right? And when the flare finally settles and I can breath a little easier the me that I have always been swoops right back in like she never left.
I can only imagine, but nicely described, wishing you well
Jane,I could not of put those words together,just beautiful! Your last comment,life must go on,I was not thinking that way a year ago,to make a long story short,at the last min.I chickened out and am so glad I did. My story went public Nov.10,2014. Was admitted to the phsyc.hospital they didn’t know what to do with me and said I was in the wrong type of hospital,so their I was,STUCK!!! In my eyes at that time,is how I saw it. I was at my lowest point ever in my 25-30 year sruggle with tn,and it just kept getting worse,and every new thing we tried either made it worse or didn’t help at all. I really felt hopeless! A terrible way to feel on top of all of the different types of tn, neuropathy and head and face pain. A little over a year later I can say,MY HOPE HAS BEEN RESTORED! Jane,your so right, we have to keep getting right back up. I am amazed at you moms with young kids and dealing with this monster that is so relentless. I almost let tn win,how crazy? I think, as I sit here now. Am I cured? No.Do I still have tn1?No. Tmj? No Gpn,gn,and atn? Yes.Is it horrible? No. Is it real bad everyday now? No.Bad weather months and days? Yes.MY answer in all these years for ME was a cream called GALLIXA, but we have to keep searching,you have such a great attitude,I just love it! Need to run, my mom needs me. I believe everything happens in its own time and for a reason. Its still a hard road but I see progress and everything takes time. I have a life back! Its not my old one but I’m ok with that. Hugs,dawn
Thanks for your comment Dawn. I am really glad that you are doing better with this monster. I too have faced some very dark times with my pain. It is not crazy that you almost let TN win. I have to dig very, very deep for strength sometimes and can honestly say it is the hardest thing I have dealt with so far in this life.
For me, it has truly been a process of grieving and acceptance is the hardest part. I am still stuck in that somehow. It just makes me so sad when I think about the things this disease has stolen from me. I have my little pity party every now and again to release all of those pent up, negative feelings but mostly I just get on with things. I try to focus on the very good things that I have in life (which are so many!) and focus on the good days.
I have never tried Gallixa but I do get some relief from Voltaren Emugel which sounds similar.
Your message just lifted my spirits. Thank you