We all know that everyone is different. As individuals we respond to everything in a different way; situations, personalities, politics, religion, education, medication and yes, evidently we respond to surgery very differently too. Of course it isn't just our response, it is our experience. No two people will ever be the same when they have a craniotomy and surgery on something as delicate and intricate as a nerve. We KNOW this to be true and we also know that recovery will vary in every single person in the world even if they have guidelines and 'expected' results, we won't all fit within certain time frames etc. It is obvious that my surgery wasn't straight forward. Not least because there was so much bleeding during surgery, but also because of the serious complications that came afterwards. The physical, emotional and psychological effects of brain surgery aren't something you can plan in fine detail, even if you have an 'idea' of how you'd like it to be, we have no idea what will happen and how our actual complete recovery will be.
I had a conversation today with someone who is 4 weeks post op. I found some of what she talked about very familiar, the tiredness, the aches and pains and the reality that you've had brain surgery. But there were many aspects of her recovery that I couldn't understand and didn't relate to. Firstly, she is TN pain free! She has some pain from the surgery site, but the TN pain has actually gone. Also, her surgery and recovery went to plan and time frames were as predicted. I can't imagine how those things felt or feel. I'm 10 months on and I felt inadequate and found I was defending myself for 'existing' this way. I no longer leave the house, for which I felt criticised as another person pushes herself to do things for her child. I felt as though I was being told I wasn't trying hard enough and at this point in time, I can honestly say, I am.
Any joy that a person feels can be dented, squashed and belittled when we compare ourselves to someone else. It is easier said than done, but very wise not to compare ourselves to anyone.
Image by Nikki Samuel
I'm really enjoying Paint Shop Pro. I used it years ago when I used to use a particular chat room and make avatars. I know only the basics of how to use it, but I can learn little by little, as I need to do. So, I'm finding positive, inspirational quotes and finding backgrounds that I like and putting the text onto them. The pleasure of getting it to look 'right' or to be Virgo friendly (us Virgo's are real perfectionist when trying to create something) is actually stimulating my mind and helping me relax and focus on the positive words and quotes that I'm using. I work for a while on the TN Awareness Day campaign in whatever way necessary and then spend a little time making my own Inspirational Quote designs. I've also been trying to create other designs that we can use for our TN awareness, to either post on Twitter or Facebook, that will try and capture the attention of people.
It's nice to be able to say I'm enjoying something. It gives me some pleasure to see other people sharing the posts and being able to relate to them. If it benefits other people then it is even better, but the main purpose of what I'm doing is to focus on something, to create a finished post and to share it with other people. If it's all I can achieve for a few hours then it's better than nothing. We all have to feel a sense of achievement, whatever it is and however small.
Be prepared for the fact that I will probably be adding lots of my images for a while!
It still amazes me that pain, discomfort, mood and tolerance can alter within just a moment. I still find this surprises me and catches me off guard. My pain level has already varied several times today, from reasonably manageable to a burning sensation with ice picks being poked into my teeth, eye and ear. Inevitably this affects my mood and brings me down, never really getting the opportunity to recharge. My tolerance is something I watch lately. I see myself able to cope with general conversations and I think 'Yes, I can do this'. Then it alters, it builds up or suddenly there are the burning ice picks and I'm in a completely different place. I don't want to talk, I don't want to do anything, see anyone or even be awake. Today I'm aware that I have to take something to make me sleep. Otherwise I will go crazy, crazier than I already am! Plus, I start to think 'No, I can't do this' which is a very negative place to be.
I try not to talk to anyone about my fears, my health worries, my general concerns about what's going on. I know people worry about me, and I feel like they can't cope with anything else being thrown at them. It is my way of protecting them I think.
The last several months have been a difficult time. I don't need to go into more details about that, I don't want to revisit that over and over again. But I do notice things about myself that feel 'different'.
I need to talk about this with my doctor, though actually getting to the doctors surgery seems to be more difficult than you can imagine. If I'm awake all night, all I want to do is sleep. Then another day has past and we're onto another night of sleeplessness. I'm certain I have some insomnia problems, that aren't all due to pain, but also the things that still haunt me. But then a night can come along where, despite the pain and memories I sleep for a good 6 hours. Everyday might look and feel the same, but to be honest, it couldn't be further than the truth. My world can change in a matter of minutes and my ability to cope alters with it.
I need to do more positive thinking.
There is something to be said for contacting the media and having them tell your story. I did this to raise awareness, to help other people understand and to educate people who just don't realise what life is like with TN.
I've contacted lots of newspapers, not the TV yet, I'm waiting until we can actually buy the fantastic TN ribbons. It won't be long now...
So I've attached the link (at the side of the page) to my TN story that was released in the local newspaper last week. The actual article has a lot more information, including an interview with my surgeon and facts and statistics about TN, including the different types. I wish the whole article was available to see online.
So much work to do, but it is a very positive place to put my energy and if someone suffering with TN can't help with awareness, education and understanding, nobody can.
Short entry tonight. I think the emotion of last night and the tough day today have caught up with me.
Tomorrows a new day, a new dawn, it's a new life...
The lyrics from the song You're the Inspiration by Chicago keep going through my head today. 'You're the meaning in my life, you're the inspiration. You bring feeling to my life, you're the inspiration. I want to have you near me, I want to have you hear me saying, no one needs you more than I need you'. Yes, I know it's a love song, but at the moment the lyrics are how I feel about Harry. He is the meaning in my life, he is my inspiration for living and I do believe that nobody needs him more than I do.
Where we find purpose, wherever we find the reason to wake up in the morning, whoever keeps us strong enough to push forward each moment of each day, is our inspiration and is certainly the meaning to our lives. It doesn't belittle or dismiss other people in our lives, it doesn't mean we don't love them or feel a desire to push on because of them. But, with Harry, he's a young child, almost 7 and I can't leave him. Even in my darkest place I know I have to keep going so that I'm here for him. Everyday I tell myself that he doesn't need me and in fact, he has another Mummy who will meet any need that I would meet. But I try to reassure myself that my role in his life is unique. I have to convince myself that I am essential to his life.
The truth, certainly as I see or feel it, is he would be OK without me around. I offer no positive role model to him as I always hoped I would. I never leave the house and yet I always believed I would do all kinds of things if I was lucky enough to have a child. I would have been a role model to my child as my own Mum was/is to me. But what we believe we'll do or what we think will happen, can change in a heartbeat. So much hope for the future taken away in a second and nothing I (or anyone else) can do to change it.
I can't help feeling this has gone past the realms of depression. I look, anxiously at my box of medication and just wonder...how easy it would be to end this misery. Then I hear Harry laugh or see his little face and feel the huge amount of love in my heart and then I know, that even in this place, I have only one choice...to keep on hoping.
