Positive Thoughts

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!

Each Moment

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.

The Media

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...

Inspiration

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.

Outcome ~ to date

The densely numb sensation in my face is something I find hard to explain. The closest I can get is the feeling you get when you've had a local injection at the dentist. Your face feels swollen, you can't feel certain areas of your face and mouth and you feel as though you must look deformed. The mirror tells me my face is moving as it always did, but my mind tells me different (in fact I feel like I could be a ventriloquist)! Sadly the left side of my mouth/tongue/lips are numb which means I bite them really easily. I forever have bites on them and can never tell if food is trapped somewhere around my teeth because I can't feel it. My eye is numb too, I can actually touch my eyeball and feel nothing but I have artificial tear drops to help with lubrication and have to wear glasses if I leave the house. The surrounding area, eyelids, cheek, side of my nose, temple and scalp are the same, as is my chin. Imagine a burn, where the sensation is altered other than the constant burning. No matter how much you run your burn under the cold water, the burning remains the same. Each tiny temperature change does this to my face - both hot and cold - increases that burning sensation and discomfort. It is a painful feeling and reacts to those temperature changes. The cold makes the skin feel tighter, as though I'm wearing a mask that prevents my face from actually moving. The heat causes prickly sensations, which I feel before I realise my face is too close to the fire and burning hot. Any exposure to the varying temperatures outside give me increased pain and it is a pain I've not yet learned to deal with.

With physical pain we have medication, meditation, complementary therapies (crystals, reiki, acupuncture, reflexology etc) and at different times I have tried them all. Yet the burning dense numbness is a completely different pain. It is extreme discomfort which destroys any self esteem you might have. When talking to someone you're forever biting your tongue, stumbling over words and the dryness of the mouth just adds to the embarrassment! I realised very early on that nothing I did, or tried, or used to medicate, altered the numbness and the relevant pain it caused. I couldn't reach for morphine because it made no difference. Massage felt nice on one hand but made me more and more aware of what I couldn't feel when compared to the right side of my face. This has made the situation really hard to deal with.

I'm aware now that this will be a process. I still hope, 10 months on, that some sensation might return to certain areas of my face, but I'm also aware that the longer it carries on, the less chance I have of that happening. I have to try and find a way of living with my 'new' face, but I also have to allow myself time to process the outcome of the surgery and the extra problems it has caused.

The TN (I can't be sure if it's the typical or atypical TN pain) is still there. I know this because THAT particular pain feels familiar and does, to a degree, respond to the usual pain relieving techniques that I'm used to trying. On the worst days I reach for Oramorph, a very strong opiate that might only slightly mask the pain but causes me to stop caring as much. It also makes me drowsy, which is always a bonus when you're in pain!

As a result of the MVD I continue to have TN pain that is constant although variable, it can resemble raging toothache that covers a large area or a dull ache that occasionally zaps across my cheek. But now I have the pain and discomfort of the numbness. At this moment nothing will ever be the same for me. I will never smile and feel comfortable, never talk and feel relaxed, I can't eat in front of people because I always dribble something and don't realise it, I can't imagine kissing someone and loving every moment because that sensation has gone. I can't breathe through my left nostril because the heavy, dragging sensation feels as though it's pulling it down and blocking it. As yet I haven't found out if that is a result of the MVD or from a wide bore naso-gastric tube that I had while in hospital that may have caused some damage. Either could be causing me problems, but I can't face pursuing that as yet. I've had my left side front teeth looked at as they are causing me some severe pain. The slightest touch with my tongue feels like someone is sticking needles up into those front 3 teeth on the left. I don't know if I've damaged them from constantly trying to pull the intubation tube out while in ITU or if they are responding to the altered sensation. I wonder if they are irritated from my top lip which can feel 'fuzzy' at times or if they are indeed damaged. My dentist did x-ray them but couldn't see any hair line fracture, but when I saw the Maxilofacial doctor he said he could see a crack in my front tooth with his naked eye.

It is hard to know what to believe yet. I don't have the finances to have a front crown and I don't even know if I need one.