My reasons for starting this blog, as I've stated many times, were to help me make a decision. I needed to decide whether I could or should go ahead and have brain surgery. When I think back to that time and read about my life, I know that I made the right decision. I was gradually getting more and more defeated by the unbearable pain. I knew I couldn't carry on like that. I was tired and broken. My decision to have brain surgery, was to fix this. I knew the risks, I knew the possible complications, but ultimately I hoped and believed that like so many before me, that I would be fixed, mended.
I have focused on the outcome, the horrendous complications, the anger and frustration in other posts. I might have also mentioned my regret. I truly don't remember if I have talked about that. But I do regret the decision that I (ME) made, to go forward, with hope in my heart and positivity oozing from every pore, and let someone (possibly relatively inexperienced) delve into the depths of my skull, with tiny, minute instruments and cauterise, move and manipulate the nerves and very delicate areas of my brain. Yes, the whole of the brain is delicate, of course, but I have no other words that feel suitable to describe the part of me that was being touched and operated on!
I had major complications that almost took my life. With counselling and in time the PTSD will go and the horrendous memories will fade and bother me no more. The physical scars are of no concern. They are an outward sign of an obvious battle.
The surgery itself failed. Well that was a chance I took and people are regularly offered a second chance MVD, even a third chance. I might have been a candidate to try again. But I'm not, and I cannot make sense of that either. But in time, my surgery failing, even while others have success, is just my personal journey and I know I could learn to live with that. I would still have this pain, but I'd have tried whatever was on offer to reduce it. But the complications and the tiny 1% of people who have AD after surgical treatment means I can't try again and, sadly, leads me to the worst part of it all.
So far it sounds like I'm actually finding good ways of processing, coping, learning and moving forward, but THIS is where I get stuck.
My 5th cranial nerve - my Trigeminal Nerve - was 'accidentally', 'inadvertently', 'permanently' damaged. The symptoms this causes, the pain and the discomfort from that damage is unbearable, constant, unrelenting and untreatable. There is NOTHING to even help with nerve damage. No surgery to repair it and no medications to relieve the griping pain or to return the sensation. I'm not only stuck on this, I'm stuck with this and I'm angry, bitter, confused and incredibly depressed. Prior to surgery I had 'why me' days, now I have 'why me' weeks and there's no answer. It's my journey, it's my experience, it's mine, mine, MINE! The answer to the problem is supposed to be inside me. But I can't find it! I hide behind my humour, I prefer to support others, I would do anything rather than face my own reality head on and not give up until I've conquered it.
I've tried Mindfulness, Meditation and Guided Meditation, Crystals, maintaining my body temperature as close as I can within 2 degrees (between 18 and 20). I've tried distraction, laughing, colouring and writing. Despite the pain, I've tried talking, Spiritual Healing, Massage, Counselling, chewing, warmth, cold, steam, reiki, facial massage and exercises that were given to me by the Speech and Language Therapist. But the feeling, the pain, the dense, burning numbness is no different now than it was when I woke up in recovery in March 2014. So I have to stop looking for pain relief and learn new ways, more effective ways, of living and coping with it.
I have to find a way to live with this, to make this 'OK' and to stop feeling sorry for myself. I need to move on and find some way of resembling the Nikki I used to know. One thing that isn't helping and is only going to get worse is the fact that I feel so defeated by this, I've given up trying. The less I've moved around, the more my muscles and strength have been lost and wasted. The more I've felt that my body is failing me, the more I've sat back and let it. I've gained more and more weight and now I doubt I could even walk further than the end of the garden and back.
I'm not an inspirational woman, I'm not a survivor, a warrior or a fighter. I've turned into a quitter. I raise awareness rather than lift my head up and face the truth. I have lost my fighting spirit and unless I find it again, I'm going to lose the fight completely. My body won't withstand much more and rather than keep saying these things in chitter chatter, letting out just small bits here and there, standing, blinded in the headlights for all this time, I need to find a place to start and then START. Talking about it and thinking about it is useless, unless it's because you're planning and preparing yourself for change. This post isn't for sympathy or words of comfort, I genuinely, truly need help.
I need to lose weight. Walk a little everyday no matter how I'm feeling or how much it will impact on my pain - sitting is still very painful, moving is very painful, but looking at 4 walls every single day is painful emotionally and spiritually.
Push myself, one small step at a time to do something - but I have to achieve something more than some pretty colouring or raising awareness of a disease that I can't even fight myself.
Make healthier choices about EVERY aspect of my life
And I need to let go of anger, bitterness, frustration, sadness and regret. Bad things happen. I need to find a way to make peace with that. Only then will I find a way to live with this level of pain.
Author Unknown. Design by Nikki Samuel
