I woke up this morning exhausted from the pain, just like every morning I have woken up since Trigeminal Neuralgia has entered my life. The pain, fog in my head, and fear of the future are my ever constant companions. I go to the kitchen to make some toast and start coffee, I need to take my teg which requires food and something to wash it down - it has to be something warm, cold stirs the invisible demon that has been residing in my face causing me pain that is unrelateable to most people. The same thoughts go through my head, as I have had everyday - "Will today be a better day than the last?", "Please god just no pain so I can do something a normal person can do."
Meds are down my throat and I already have that burning, aching pain in the right side of my face, I hear my fiance yell from the bedroom,"honey, you woke up four times with attacks last night," that explains why I am so damn tired. I feel so guilty, I know she watches over me exhausting herself. I sit down and make the proper notes in my pain journal - I keep this journal to help my physicians prescribe the correct dosage of medications for me, if I didn't have it I would not remember specific symptoms or areas of pain. I hate making these notes, it is just a reminder that I do not function like the rest of the world - an insult to injury that just puts me in the throws of depression even further. I turn on the TV and pick up the computer - this is my thrown, I want more and one day I may have more, but for now this is my life...waiting for the pain.
I type in the password to log on to the computer and pull up the internet browser feeling depressed, "I think I will check on the support group, that usually picks me up." As the browser pops up I notice the love of my life has been researching treatments and studies of TN - suddenly I feel so much better. I feel blessed. I know I am lucky. I drop the pity party. I have a partner that researches how to make me better. I have a partner that will lose sleep just so I can make proper notes in my journal in hope I can get well. I have a partner that loves me. I can beat this.
((( dannyj )))), having a partner like that is everything! I’m blessed too with an incredible husband. I know you’re struggling right now, better days are possible, and I hope they happen for you soon!! Sending positive thoughts! Mimi
I am so glad you have such a great partner! I have a wonderful husband that helps me too. We are lucky and you are right, it is important to remember it! Thanks for this :D.
I feel blessed everyday for having people who care for me as well. I'm so happy you have someone too. It's what lifts us up and will keep us fighting. For those who don't remember you have to fight for yourself. I'm sad so many of us are held captive in our bodies with our minds still free. I wish you all the strength to keep fighting, to keep getting up and reaching for a better tomorrow. My biggest piece of advice I can give to anyone is keep researching. There are doctors out there to help us. There are just not many who can. Facing Facial Pain is a great network of people who volunteer to help people with TN. They have the best information and advice out there. And lists of Doctors. Best wishes to you.
I love your post....I too have an amazing man that has lost many hours of sleep researching, not to mention hours working to drive me to doctors appointments to beome aware of my condition and then to the hospital for the surgery and continues to do these things since it failed. I was already falling in love with him but this has really topped the cake! And I fall a little more in love with him everyday. I am very blessed in the sense that I have loved ones helping me in anyway that they can. (this is not to gloat, I am just sharing) It saddens me that he is spending so many hours, days with lost hours of sleep/work researching. I often sit and stare into nowhere - wondering what (or how) will I will ever be able to do (or say) to let him know how MUCH IT MEANS to me. We all have angels, and he is mine!
My wish is that everyone had that same support at home. Knowing that this site is here for all of us, whether that at home support is possible or not, and the wonderful heartwarming people here helping and sharing their personal stories with total strangers to potentially help us find an answer that works for us. We are are blessed in differnt ways, just as our TN affects us in different ways.Keep fighting the fight......Sending each and everyone of you positive energy from OHIO....Jodi