A better understanding is needed.
Men are not mind readers & the majority of people do NOT 'get it'. until you explain it to them.
For the past 6 years I have suffered with a twitch.. in my head, pretty much constant that progressed & strengthened into such pain, I could not walk or focus. I had surgery and it was not a complete success. It did remove a ‘Blockage sensation’ in the front of my head I had. It never went away and in time had steadily increased in frequency and
in pain. It is 10:30 a.m. and I’m ready for my nap. I am up, usually at 4... it takes me a while to get medicated and calm my twitch. It is so strong in the a.m. I can be hungry and the pain goes right to the pit of my stomach, the thought of food suddenly has me gagging.
I try to read. I TRY because it is physically maddening to read with a constant twitch. TRY it. FOR 6 years. It is a LEARNED habit, I cherish. I also read something that will ‘force’ me to start my day in a positive light. It is too easy to be dragged into darkness.
You have to kick at the darkness until it bleeds daylight.
I have a friend Mona who reminds me of that.
‘By 10a.m. most days I choose- Cry OR DO something.
Not just do.. BE creative.
Walking is something I MUST focus on most times, I feel like I have a weight in my head wobbling the rest of my body. When being constantly zapped- what do you do ?
Learn to live through it & Thank God for each time you come out the other side.
I don’t share any of this for PITY. Pity is not what I need.
I need loving vibes sent. Understanding for me and others like me.
I have Trigeminal Neuralgia & some.
I have on average, on a good day 5 major attacks an hour.
I have a very visual case. I find it difficult also on levels socially.
Photos taken this a.m. shared. *Hard to do. Even if just in a blog.
People can see my pain. It makes some uncomfortable. It makes me uncomfortable.
I must force myself out socially. BUT my home is different. IT IS my comfort zone that I NEED badly. I invite only those who I know come with love and nothing else.
I am very selective of who I even invite for a coffee.
The woman from the TN Support group, Kathy has been very supportive to me personally. She responds to my e mail, some nice, some angry -(I figure if she can’t FU*KING understand, who will?) She does not judge and encourages me - she also pointed out that ‘I seem to be ashamed of my disease.’
I though when I read that: That’s BULLSHIT!
She was right. I am ashamed. I have no control. ;(
The world world can see, I have lost control of my own face. My mind is zapping me 24/7 and it hurts and I can’t stop it. Dr.s can’t either. Not without a lot of GUESSING.
I sometimes think THANK GOD - they cannot see the pain that comes with.
I don’t want Pity! I want understanding!
When I am stressed and the blood starts to race a bit faster- I can start to resemble, as if I am having a stroke. I also can NOT bend over all the time for the same reason.
It triggers stronger attacks and NO thank you! I have enough in a day.
*IF I'm having a PHONE conversation - say with the government - ( LOL - usual bullshit) and I start to get upset - as they an cause you to do - it can trigger an attack, I slur my words and my face cramps and HURTS. They can’t 'hear' this on the phone and when I go quiet, I’ve even had people who appear to lose patience!
I AM in the process of finding out how to get my communications in writing! WHY NOT?
YOU know why - because then when they SCREW UP, you have a record!
Recently the government screwed up- after MONTHS of running around and passing the buck- ADDING UNNECESSARY stress to our lives -It was NOT until AFTER I was FORCED to send a threatening letter - assuring I would be happy to involve Dr.s, Lawyers and the PRESS - we did get a phone call and APOLOGY and admitting numerous mistakes were made! Amazingly someone was READY to actually listen. It is draining and I know we are not alone! Speak to anyone and you hear the same stories.
How many do not have even the energy to argue. Too many.
There services are in place to help us? I find it hard to believe.
I am so very tired of it. I refuse to be ‘judged’ by anyone WHO does not know and refuses to KNOW OR LISTEN!
I AM DONE. I will not apologize for this! I will NOT be ashamed and I will educate!
IF I can - and I CAN.
Do I wish I was NOT the one to be educating you on this!?
YES!! I AM. Here, Literally the face of pain.
I do get breaks, Naps do help. Positive People, Vibes, books, shows.. all help.
Why would anyone want it any other way? If we lose it quick, we apologize quick in this house and move on. I thank God for my guys and their patience & LOVE they provide me with every hour of every day. If I ask. ;)
Men ARE NOT mind readers.
A little understanding from strangers - is that too much to ask?
DO NOT judge UNLESS you know - and even then. Why bother.
IF you don’t have anything nice to say - don’t say it.
DON’T tolerate it either.
Everything for a reason. I am learning to embrace all that life gives - as long as I remind myself I am never alone, I’m going to be o.k.
I’m never alone. ;) I don’t mean the dogs... lol
The world can see, I have lost control of my own face.
But they can’t see, I have not lost control of my faith.