Last night I went to bed in tears. Feeling completely frustrated and overwhelmed.
I had another visit with the neurologist and after the usually questions and concerns, I asked him if he actually had a diagnoses, after talking about Hemi facial spasm and Trigeminal neuralgia, the 5th and 7th nerve... No.
They cannot understand why I am having what I am and the pain associated with it.
I feel when I tell them how bad it is - it is not that they don’t believe - CLEARLY there is something going on, but I think they don’t ‘get the severity’ of it? I wonder is it because I am not in the office sobbing? Or that I don’t lie around all day feeling sorry for myself?
I can tell you, I DO feel like doing that.
I fought off tears several times in his office yesterday. IT is much harder to try to remain positive and busy and hopeful.
After the last surgery, I do feel better BUT whatever is going on is still going on and every day It MAKES me very aware that It can all be gone in an instant. I struggle with this reminder - as much as I AM REALLY grateful the new found appreciation and determination.. everyday thinking my brain is going to explode is exhausting.
These constant electrical zaps leave me feeling ‘fizzled”
My attack last week left me exhausted for 2 days.
I still have them constantly.. with a “doozie’ every now and then making an appearance.
Usually one a day. ;(
In his opinion, it is not getting better (mine too - it’s going on 4 YEARS slowly escalating)
He feels more surgery is the only opinion. The first not a complete success (it was in the fact that I’m still here! :) NOT knowing exactly what they are going in for... has me not to keen on the whole idea again - recovery itself seems daunting. Been there done that and in NO hurry to do it again.
I am frightened.
I need to take a break and think.
I wondered about sharing this... it’s time. My hand forced by someone on FB. This is my life at the moment and for what ever reason this is where I am meant to be. Happy or not.
I had a lesson last week on FB when someone was PISSED at me. Angry because I have not been responding to his messages or posts. First let me tell you having over 500o people on FB has it down falls, like messages every time you log on, I am constantly added to groups, events and my messages are never fewer than 50 every time I log on. Hard to keep up with for anyone, never mind someone who is also trying to work, be a mom, cartoonist, wife and suffers from some crazy brain thing.
I then was angry with him and asked him if he was aware I had brain surgery and have still been dealing with serious issues. No he was not.
No he does not bother to read my post, blogs etc only pissed that I did not share his website and his goings on. Yes, he apologized.
So here it is. I am not well. I have not been well for a while. I have been sicker than I have let on to most but a few are very aware of what has been going on. On top of all this I deal with other stuff, like the constant concern and battle over my sons medicine. Cannabis.
Stress added to the mixture - not good BUT unavoidable.
A growing concern with changes expected in the near future, no thanks to Health Canada.
I have hoped people would focus on my work and not my health and it appears to have worked out ;-) I can’t get mad for the lack of others understanding, awareness or even compassion at times. It says more about them than it will ever say about me. Simple.
I will end by saying that when I woke up today the first thing I did was thank God for opening my eyes and for the fact that I got out of bed.
I will NOT spend the day in bed crying, I will draw, spend the day with the girls (Storm is camping) I will celebrate every meal I am blessed with and every conversation I have. I will continue to hope I get better. I will have faith that everything does happen for a reason. All of this BTW has made me a better person.
I will also continue to use my cannabis as it numbs the pain and gives me a break if only for minutes at a time. I am grateful for it. It keeps me positive!
So why share? In hope that if ONLY one person stops and thinks before they make assumptions, judge or even aggravate - do you really know what each other is dealing with? How about we first ask ourselves that before we jump on some ones back as to why we are NOT the focus of THEIR attention.
Compassion and LOVE.
I am stronger today than I was last night.
I know why I am drawing and now I know why a few years ago we called my strip:
I have a friend who says his all the time.. Let Go and Let God. Surrender. Have faith. I struggle every day with this.
It is so hard to just let go. I try to control this ^%$# twitch - still - 3 years later and I say to myself - I can make it stop. It's no different from yesterday - it just seems like on some days it becomes too much. Little things that I deal with all the time suddenly seem HUGE and I want to scream out of frustration. I feel myself build up anger, resentment - I start to feel emotionally and physically exhausted and overwhelmed.
Time to LET GO!
Time to stop fighting it, take a mental break - step aside, read a book, distract yourself, meditate. Time to hand it over.
As if we have any control over any of this anyway.