Enough

Have you heard the saying, 'I wish you enough'? 

Well, the story is about an old lady who is at the airport, saying goodbye to her Daughter. Somebody close by heard her say, 'I wish you enough'. After her Daughter had gone through the gate, this person was believed to ask what it meant. According to the story, this was her explanation.

"When we say, 'I wish you enough' we are wanting the other person to have a life filled with just enough good things to sustain them". She explained that it was passed down by generations and continued to recite what she obviously knew by heart.

"I wish you enough sun to keep your attitude bright.

I wish you enough rain to appreciate the sun more.

I wish you enough happiness to keep your spirit alive.

I wish you enough pain so that the smallest joys in life appear much bigger.

I wish you enough gain to satisfy your wanting.

I wish you enough loss to appreciate all that you possess.

I wish you enough hellos to get you through the final good-bye."

Author Unknown

I often think about saying or writing this wish to people, but have always avoided it. I don't want to be too clichéd or feel I have to explain it. I worry that it might sound as though it lacked sincerity. However,  I really like the sentiment.
The Oxford English Dictionary defines the meaning of the word 'enough' as, '

As much or as many as required'. Surely what one person considers to be the ideal amount, a suitable level or appropriate measure will be different to the next person? But the biggest factor in this of course, depends entirely on the subject or topic you're talking about. It could be any of the things written above in the story, in fact it could mean anything.

As somebody with chronic pain I use or think the word 'enough', quite a lot. I describe myself as 'not enough' or 'not good enough' and live with feelings of inadequacy most of the time. I don't earn enough because I can't work, I haven't played with Harry enough because I've had to rest or I didn't achieve enough today because I was struggling with medication side effects. The list could go on. Some may say that it's easier or that we're more inclined to focus on the negatives and I'm sure there is some truth in that. However, I can honestly tell you that there's nothing 'easy' about believing you aren't good enough. But this is the reality, in my experience, of most people who live with chronic pain.

Unrelenting, debilitating chronic pain is exhausting. The implications and the effects of chronic pain are devastating. Depression and feelings of low self esteem caused by chronic pain are truly horrendous. Yet, despite this, you can be enough, achieve enough and feel enough. It's really a matter of realising, that within your limitations, you are here and in some small way, you are experiencing life.

I live for the moments when I feel nice and however short they are, I have to accept that they're enough. I know that I achieve what I can, when I can and either way, I'm not inadequate. I might have days and days where I feel it, but I have moments where I know it's not true. For as long as my life has to be dictated at some level, by this griping, burning, zapping pain in my head and face, I will accept, when I can, that I am enough, I am giving enough and that moments of happiness are infinitely better than not allowing yourself to see them or feel them.

Every single person is given the opportunity to have enough, if they let themselves. The secret is finding the way and not allowing the pain to mask everything that's good in your life. I don't manage this all the time, not even every week, but I'm learning and eventually I'll start to notice other times where I'm being given enough. 

I refuse to live my whole life feeling inadequate. Right now I'll accept that they'll be days, maybe longer, but I won't let myself miss out on having and being and feeling 'enough'.

To anyone who might be reading this,

I wish you enough.

Nikki

                                  Graphics created and owned by Nikki Samuel

Fundraising

In 2013 I was very active in the First International Trigeminal Neuralgia Awareness Day, on, and leading up to October 7th. I had created graphics, a video, had some media attention with CNN and the BBC and whilst not focusing on one area, I wore myself out. Several weeks after the awareness day I decided that I wanted to shift my attention to fund raising for the Facial Pain Research Foundation. We had a lot more people dedicated to the cause and as an International TN Awareness Fighter, I could still be involved in awareness, but as part of a much bigger team effort.

The only problem I could see, was how could one person, who almost never leaves the house and literally has no 'social group' actually raise any money? All the ideas I had involved large numbers of people, walking, racing, sponsoring or gathering together for a fete or gala. Unfortunately, none of these were things I felt able to do. So for someone who spends a lot of her life in bed, I admit that I was beginning to feel defeated. 

But then I started to listen to what my fellow TN sufferers wanted and that seemed to be something to wear; an outward sign that they were supporting a particular health condition/cause. So, I started to put some money aside until I had enough to buy some Trigeminal Neuralgia wristbands in our colour teal. Confident I would make back my initial outlay, I also looked into sourcing a ribbon shaped lapel pin and, within 3 days, I had a design I liked. Somewhere on the other side of the world, manufacturing began! These were items I could sell and it was something I could do on my own, without crowds of people and from the comfort of my living room.

I bought some small teal organza bags for the lapel pin and white organza bags for the wristbands, so I could make the presentation of the items look even better. I bought a large bag of dried lavender and I put a small scoop into each package, to make them smell nice when they were opened. I knew that these items were selling to TN sufferers and I sincerely wanted them to smile as they opened up their package from the UK, not only to find their awareness items, but also to see that I'd given them some thought and paid attention to detail. There are days that TN sufferers can't find anything to smile about and I wanted their package, despite being a reminder of the pain they live with, to give them a reason to smile. That in itself was a big success!

I set up a new email address that I would give out purely for awareness items, I knew I had to keep orders separate from my personal email because I get so confused, so easily. I was helped by a friend and fellow TN'er in the US - Debbie Murphy, to set up a spreadsheet that kept a tally as I added each order. That spreadsheet helped me keep myself up to date with invoice numbers, payment details and also if the package had been sent. But because of my medication and the memory issues I have, I had to keep on top of orders and payments as they came in and I needed to keep my documents and files updated. I did have a couple of days, where my pain levels were too high for me to even package an order, but people were patient and very supportive. Even though some people had paid, they were more concerned about my well being than their orders. I was so touched and calmed by their responses. It took me several days to send out the invoices, which involved a lot of concentration for this medicated mind of mine, but I eventually got through them all!

The wristbands and lapel pins sold out within 10 days. Orders were sent to Sweden, Finland, Ireland, Italy, France, Germany, Scotland, Australia, New Zealand, Wales, America, Jersey and Canada. I sent a few to well known people and celebrities for promotional purposes and kept one for myself for my hard work!

In total I raised £1500 (just under $2500 US).

If we believe that one person can't make a difference, they never will. But my fund raising project proved to me, that we can all make a big difference. If we spend too long looking at what we can't do, we'll lose sight of the things we can do. I was feeling defeated by my personal situation and believed that in isolation I couldn't raise any money. There is something everyone can do, if they put their mind to it. Having paid the large one off payment for the lapel pin mold, I think I will invest in another batch as there are still people asking for them. But for now, I have our Second International TN Awareness Day to think about and I have more people and places I hope to ask for support. My TN prison prevents me from doing a lot, but with my trusty iPad and the ability to send emails, use Twitter and contact people electronically, I remain passionate about TN awareness, the Turn Teal for TN campaign and raising money for the Facial Pain Research Foundation. 

                Graphics created and owned by Nikki Samuel

I'm Stuck and I'm Losing

I am stuck. Stuck in a place of negativity. I feel surrounded by stale and stagnant energy that is coming from within me. It feels as though I HAVE to move on from this place or this 'nothing' life will be all I ever have.

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

  

Complaining

Searching tirelessly for email addresses, cutting and pasting the information, adding the ribbon, making sure I make note of who I've contacted, saving everything to the 'Lighting Requests 2014' folder...and on and on it goes.

Yes it's relatively tedious, but again this year there aren't many doing it. Yes, there are more than last year, of which I'm VERY grateful, but I'm curious why more people don't get involved in this aspect of the awareness day.

It is very, very satisfying and fulfilling when a place says yes, and in the UK a few people have really added to our success. However, either places say no, because of money, or they don't support causes, or they have a list of causes that they already support, or they simply don't have the facilities, or they just don't reply.

I appreciate that people don't want their name in the newspaper or they don't want to appear on their local news (that's proven to be the most effective and yet people aren't prepared to do it), but a lighting request is something they really can achieve. As there are many more if us involved in this years campaign, there is a lot more support and I for one, don't feel as stressed or under pressure. The result of several very stressful months really took their toll last year and I was physically and emotionally unwell for quite a few months.

What I really don't understand is this.

Some of us are doing everything we can possibly think of to raise awareness. Talking about and focusing on the actual awareness day is such a positive thing. That's the day we can explain why a nearby landmark is lit up in a glorious teal colour. That's the day we will get the media involved, we will make people listen. And yet, every single day there are people complaining that TN and a Facial Pain Disorders aren't understood or they remain unknown. These people are free to get involved and help raise awareness, or to help educate their local community, hospital, dental practice, chiropractor, etc etc. But instead, they won't do any of those things. They won't donate £5 or $5 or any other amount to support the hard work that's happening by some individuals who want to light up a famous old landmark. In the UK a lot of places don't have the facilities to light up, let alone in a certain colour. Anyway, my point is, that people appear to prefer to complain about the lack of awareness, than to actually help out and show some faith in what we've already achieved.

It is a mentality that I'll never understand. In my attempts to not give a rude response, I tend not to reply if someone in a support group complains about lack of understanding and awareness. My reply would be easy, I'd simply say 'Change it then'!

Who Knew?

After waking up on Monday morning and knowing that I needed to make some serious changes to my life, I've researched and read more on the concept of 'Mindfulness'. I can't pretend that I had heard of it while I was nursing; I can't even say that someone has recommended it to me, because until Monday, Mindfulness wasn't even a word I ever used. I certainly didn't know it was a very well researched and reviewed behavioural technique. I had no idea that it had been written about extensively and that it is used around the world as a therapeutic tool, for improving mental and physical health. However, over the last six months, certainly since I have been feeling increasingly depressed, deep down I knew what I had to do. Well, I mean I was aware that it was my mental approach to my physical pain that was the problem and that I needed the tools to help me find a different way of coping. I also felt (in my own words), that I was looking at it all wrong and that I had to be missing a healthy, holistic coping mechanism that other people obviously knew all about. However, to balance it out and to give you the whole picture, I also thought I'd exhausted everything, from medication, therapy, spiritual healing and all the most widely available complementary therapies. In other words, when I woke up yesterday morning, I believed I had to discover something new. I didn't know there was a whole world of mindfulness out there to explore.

Before I publish this blog entry, I want to make a note to myself. I have chronic, disabling, unrelenting pain. I regularly feel the power of a blowtorch on my face, a highly charged electrical surge across my cheek made worse by the gentlest breeze, the constant grinding ache in my teeth, permanent pressure in my head, eye and temple and a dense burning numbness that often paralyses me, through fear of the slightest change in temperature. This is my existence, my reality, my life. You may feel the description is dramatic, but only I know how horrendous my pain is. I live with this day and night. At the same time, I take a ridiculous cocktail of medications that should knock out a horse, they inflict horrible side effects; short term memory loss, tremors, confusion and drowsiness to name just a few. This is, as well as, the pain. I have to accept that this is my reality. 

However, there would be no point in pursuing the positive, unquestionable benefits of mindfulness if I remain focused on the negatives in my life. But I'm about to put my energy into finding a way of living with this reality and I hope to write about the ups and downs and the challenges I face. It is important to me, that my note to self, gives me something to reflect on in the future, perhaps to see how much progress I've made or to remind myself of where I was, emotionally and physically, today. I have not written this note to myself as a 'get out clause' or an excuse to fail. But I won't belittle my reality and the pain that other people living with TN have, just to write a positive blog entry. Acknowledging how bad things really are will hopefully give a true insight into the real outcome of embracing a new approach of living mindfully. 

Image by Nikki Samuel

Mindfulness

I've been aware lately that I haven't shown the more positive, upbeat side to my personality and of course, you can't force yourself to be that way. If you don't feel it at the time you happen to be on line or when you're inclined to write a status update, then you simply don't feel it! I tend to share the times when my pain is at it's worst, or I feel a failure and I know I also focus on losses quite a lot. I know why I share this side of myself, but other people probably don't. It is often misunderstood as being depressing, needy, dramatic or any other negative explanation. However, I know when I need the support of my friends and I also know that the people in my life, who live with chronic pain, are often the people who understand the way I'm feeling. But today, I woke up, knowing I had to find a new way of coping with my situation. I'd already been thinking about this, so I knew where I was going to search for more information. I looked through some books on Amazon and felt despondent. I kept coming to chapters or essential parts of a guide, that talked about 'being outside', 'at one with nature' or 'sitting on a park bench'. The minute I came to a section about needing to go outside, I thought to myself, 'Nope, that's not the right book for someone with TN'! Then I carried on to the next book.

After looking at several and using Amazons great feature of being able to read a few pages, I began to think that there wasn't a book out there for a 40 something woman, with a disabling condition that for most of the time, prevents her from leaving the house. In fact I wondered about those who are completely bedridden and how those books would impact on them.

I wrote a status update at this point, which I've posted here (yes, it was an epic update, rather like War and Peace)!

'I decided that I needed a new approach to my physical and emotional well being. Let's face it, the current one isn't working and I desperately want a more positive way of looking at my life, rather than it being a little 'hit and miss'. Anyone who truly knows me, will know that I believe I'm blessed and very lucky in some aspects of my life and hopefully, I don't take those people for granted. Mind you, it's easy to fall back into the desperate place of not feeling lucky or blessed, several times a day. So, in my search, I've been looking at books on mindfulness, something that I feel drawn to and I'm grateful that Amazon have this feature where you can read a part of the book. Most are self help, structured, meditations or guides. But, they ALL have at least a chapter or a step that requires you to be outside. OUTSIDE IS THE ENEMY...that's where there are temperature changes and breezes, or winds and hot or cold conditions. Not one of these books was written to help someone chronically unwell/in pain with TN and I'm frustrated by this! Perhaps I need to read these books and write my own version based on conditions where you are unable to go outside on 350+ days of the year! Yes! Perhaps that's what I'll do. I'll get the books, I'll learn and I'll use it for my own health and as research too. Because I need to feel better about my life and the only person who can make me reach that place, is me! — feeling determined'.

I had an amazing response! In fact I think the people that took the time to comment really understood what I was feeling and I had some of the kindest, most supportive, generous comments I've ever had. That lifted me, not that I was feeling particularly low, but to read those words of support would lift anyone, no matter what their mood. Plus, the suggestions and advice I received was PERFECT!

What I realise now are 2 things. The first is that I don't need to write a book, I need to adapt my way of thinking when I'm reading certain text that I feel doesn't apply to me. The outdoors IS somewhere I can go...as often as I like...in my mind. I can turn that negative chapter into a positive one that does apply to me and life with TN. The other thing I realised, is that I have a lot of people in my virtual world, who truly care about me. It's those people who I'm often reaching out to when I post about my pain or my disappointments in life. What I find interesting, is that nobody from my direct family ever comment or like my status updates, but I believe that says more about them and their inability to say something thoughtful. If my 'relatives' post something on Facebook, I always comment, but I think they scroll on by and just ignore the black sheep :) So, the other thing I actually realised was that my friends within my world get me through the toughest times, but they also share the best times too. 

I've now bought two books, with more added to my 'Wish List'! The books I chose are:

Living Well With Pain And Illness: Using mindfulness to free yourself from suffering: The Mindful Way to Free Yourself from Suffering by Vidyamala Burch.

How to be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard.

Both of these books are about Mindfulness, a technique, much like Cognitive Behavioural Therapy where you follow meditation and the power of the mind to view life in an open, optimistic way, rather than seeing closed doors everywhere you turn. I describe it that way, because that's how I often view my life and it was certainly my reaction to the chapters in the books that talk about getting outside - obstacles, closed doors, whatever you want to call them. There is a lot more to it than this, but hopefully the lessons I learn will become blog posts of the future.

I've done some CBT with a therapist and with her particular techniques I got as far as I felt I could go. I am usually a positive person, but lately I've been filled with despair; life and the future feel hopeless. That's not great for someone who often says, 'Hope is my middle name'! I think I'm ready to face some of these demons and challenge myself on the limitations of my life. I certainly don't expect miracles, but tiny steps and the chance to let go of being terrified of where I've found myself and work towards making that a better place, not just for me, but for my loved ones too.

   

           

                                                   Image by Nikki Samuel

Distraction

For a long time I've heard the term 'distraction' used by many. I've not really looked into this too much as I've seen it as another one of those amazing suggestions/cures from people who don't really understand what life is like with chronic pain. I'm aware that health care professionals use the term and consider it a good tactic in dealing with pain, but I have remained dismissive. Whenever I thought about distraction, I assumed I was supposed to aim to distract myself from the pain, long enough to go to work, have a weekend away, go on a day trip etc. As always, I've aimed high, far, wide, large and thought in giant steps. Today (yes, quite literally today), I have realised what distraction can do and I now look at it very differently. There is a very real possibility that this might have a huge, positive impact on my life.

I've made no secret of the fact that I rarely leave the house or take part in activities. However, in the last few weeks a few small things have happened in my life. The first, which sounds like a negative thing, is I managed to take a tumble and fractured a bone in my right hand. It's nothing serious, more inconvenient than anything, but it has meant a few trips to the hospital, forcing me out of the house! I resented having to go and each time I did pay a price for being in that hot, dry environment and feeling stressed. Each time I had to increase my medication and try to pass out. But, at the same time I heard a little voice, whispering in my good ear, that if I could attend the emergency department, unplanned and spontaneously, then perhaps I need to put that same energy into other things.

The Winter has been long and hard for many of us and the colder weather is such a big trigger that I do tend to hibernate until the Spring. But, 2 weeks ago I made the decision to go and watch Harry at his swimming lesson. He only started a few months ago and the weather hasn't allowed me to go. The heat at the swimming pool is almost unbearable and would have been impossible if going in after being outside in the freezing cold. But, on this particular day, the sun was shining and I was feeling determined. I'd been told that Harry was doing well, but I've been desperate to see him for myself.  I have to be honest, for a 30 minute swimming lesson I don't recall feeling any pain! Not only that, we were both as excited that I was there and he thoroughly enjoyed showing me what he could do. During that lesson, I was the proudest Mum in the world, with a very happy little boy. So, perhaps there was something in this idea of distraction.

A week later was Harry's first school play/musical and again I was feeling determined. I just couldn't miss it. It was hot in the school hall, but my eyes were fixed on my little chap, who blew my mind. He looked at me, puffed out his chest and performed his heart out. He put emotion into every line he sang and smiled his way through, looking over at us at every opportunity. The performance lasted a little over an hour and I can honestly say that although I had moments of intense pain, I had approximately 30 minutes where I felt no pain at all! What I had, was a happy little boy who was thrilled to have both of his Parents there. I was so proud, I cried happy tears.

Just this morning, Harry and I were on our own for a few hours, for a while we were chatting and laughing and both excited that after several weeks we'd finally achieved something on one of his Xbox games. For roughly half an hour I don't recall feeling any pain. I was distracted by being silly and playful and having fun. We were both happy little souls and on reflection, these times of silliness, laughter and pain free moments are more frequent than I realised.

Distraction really works. My mistake was not taking baby steps but trying to achieve big goals. But when you feel determined, when you want something bad enough, distraction is possible. It might not happen every time, but it DOES happen. I am now an advocate for the potential of distraction and the benefits for people with chronic pain. The idea is to aim small, on something that really motivates. It will be something different for everyone and will potentially give different results. For me, being with my Son is by far the biggest motivating factor and although I need to accept that I'll still miss things and that not everything will be possible, new opportunities and periods of distraction from the pain are very real. If it means being able to share more of the joy, with little or no pain, I will never be dismissive of distraction again. I feel grounded and a small, yet significant sense of hope.

                                                           
                                                   Image by Nikki Samuel

Life in the Slow Lane

Living with pain can affect every aspect of life; there is an endless list of chores that are unachievable, plans that have to be cancelled, errands that require assistance, tasks that, put simply, will trigger or exacerbate chronic pain. If that chronic pain is TN it can be a really difficult challenge, not only for the sufferer, but also for family, loved ones and friends. TN is more than an invisible condition, it's a pain that's almost impossible to describe effectively for someone to grasp the enormity of 'pain in the face'. This isn't true of everyone, those that witness the effects of the pain regularly or know you well enough, often understand it without words. They see it for themselves.

'Pain in the face'. When you say it like that it sounds quite pathetic! Even when you expand it to, 'nerve pain in the face', it still doesn't sound like a condition that should greatly effect your quality of life. After almost 9 years, of TN1 and TN2 (and 2 years with AD) I still struggle to find ways to describe it and words to define it that it might help someone new in my life, really understand.

When I wake up, the first thing I feel, is pain. The moment I sit up, that pain escalates immediately, as it does with any movement I make. If I walk, bend, lay, sit, twist or turn, my TN pain increases. When my heart rate rises or I stretch, strain or lift, the pressure makes my pain much worse. Smiling, frowning, crying, laughing, chewing, clenching, even licking my lips will raise my pain levels even higher. So, when I think about an average day and the number of times I might do any one of these things, is it any wonder that I am in pain?

When I actually have a shower, the water feels wonderful and refreshing. But if that water falls onto my face, the fine sprays feel like they could be pins, pricking and piercing the skin, causing surges of power to fire across my jaw and cheek. That wonderful shower that I used to enjoy and was part of my old daily routine, has become real torture. I rarely shower now, the fear of even more pain is too great, so I rely on washing, baby wipes and dry shampoo!

The feeling of clean teeth and a fresh, minty mouth is something that everyone takes for granted. What would have been the next part of my old daily routine now feels like a hammer, battering my teeth and gums while firing red hot darts into my teeth, lighting up each nerve ending and sending shock waves across every inch of my face. While I know my teeth will be rotten and nobody will want to kiss me, the pain from brushing my teeth is immense. I rely on mouthwash and a very gentle, tentative clean when I feel I can tolerate it. Somedays, I take extra pain relief in order to brush my teeth.

Staying in my pyjamas doesn't help me emotionally or mentally, but I know I'll try to sleep again in a few hours, so it saves the trouble of getting dressed and dirtying clothes, creating more laundry and, I'm comfortable. I know this isn't like me. My old routine meant styling my hair, throwing on my jewellery, a little makeup and my uniform, picking up my bag before rushing out to work. 

My journey to and from work was an important part of my day and would be the next part of my old routine. I'd have the radio turned up, window slightly open and I always managed to fit in 2 smokes before I got there. I used to sing at the top of my voice or I'd have conversations in my head with people! I had my brand new little car and driving gave me a wonderful sense of freedom. I also enjoyed the independence and sense of adventure when jumping in the car to take a spontaneous trip out. I haven't driven for a while now, putting on my seatbelt starts the sparks in my face. This happens before I've even turned on the engine. Knowing that those sudden jolts of power can strike at any time has made me too scared to drive and the bumps in the road are an almost certain trigger. Also, the amount of medication I need causes exhaustion, confusion and memory loss which increases my fear of getting back behind the wheel. I miss not having my independence, there's no way I could tolerate the music too loud and the act of driving, literally hurts. I know I rely heavily on others to fetch things or to take me to appointments etc. but this is another huge loss, an enormous burden and another thing about my situation that I resent. 

The job we do often defines us. Perhaps it shouldn't and maybe not everybody feels this way. But, for several years, before being happily married and becoming a Mum, my job certainly defined who I was. Nursing was my passion and even though, looking back, I could have done better, I did the best that I could at the time. I enjoyed my job, I had highs and lows but I loved my colleagues and respected my patients. But I also felt a huge sense of achievement when I got paid. I knew I'd earned it and though nurses aren't paid an awful lot, it gave me a good quality of life, financially. Work and that routine, the passion and sense of achievement have all gone. Colleagues have moved on and there is no longer a sense of 'comfort' financially. I still grieve for the loss of my job, I mourn the person I used to be and I desperately miss the team work, the friendships and the social life. This is not the person I choose to be, this is the person I've become because of that 'pain in the face'.

Spontaneity, a love for life, holidays, day trips, socialising, riding my bike, taking a walk in the countryside, wearing make up, growing my hair, eating some of my favourite foods, swimming, smiling, talking, singing, visiting family, trips to the park or the beach, intimacy, brushing my teeth, showering, sleeping, being the parent, the partner, the friend, the daughter, the sister, the auntie and the person I used to be, are all parts of the old me and my old life that are gone. I'm still not able to accept all the losses and learn to live my new life with the same passion. I truly don't know how to lead a fulfilling life in this much pain. The firey drill that bores into my ear, the constant ache in my whole face, pressure behind my eye, shock waves that start behind my ear and flash across my jaw, my cheek and scalp and the feeling of every nerve in my teeth being stabbed with a sharp, hot needle are just some of the ways that TN manifests itself in me. Yet, despite the pain, fear and anxiety, I remain hopeful for the future. I know the cure is coming and I'll jump at that, at any price.

At 30 I was enjoying life in the fast lane, but by 35, I was forced into a life in the slow lane.

                        

                                            Picture by Karen Brigham and Rebecca Thorpe.

My TN Family

My TN Family have come to mean so much to me over the years and months. The relationships are special, some are unique. What brings us together are also the things that could tear us apart inside. But because of our Family, we are able to love, laugh, hold onto hope and cherish friendships in a way that most of us can't in the 'real world'. Why? Because online you don't let people down; you don't have to constantly cancel a coffee date or a meet up and the way we express ourselves is completely different than if we were sat across a table, talking face to face. It isn't that those real world friendships are false or that we can't be truthful, it's simply because nobody can understand chronic pain in the same way as another sufferer. The family and friends in my life who don't live with chronic pain, understand what I mean by this but I am in no way undermining the love and support I get from them.

What is shared online, in support groups, private messages, on a persons wall or in a status update, is often the vulnerability, the fear, the reality, the sadness or the joy of our current situation. As we live, from moment to moment, the World Wide Web witnesses it all. But, it is the honesty in those messages, posts or tweets that make them different. Online, surrounded by our TN Family, we feel heard and understood. It is that ability to speak and be heard that makes these relationships essential to our lives and our wellbeing. There have been so many times over the last few years that I've typed something, had second thoughts and hit delete and then typed it again. Having the courage to speak freely can be challenging and can open you up to criticism. But, in my humble opinion, it is only with that openness that we find the support, encouragement and reassurance that we need to feel 'normal', or as though we belong to something greater than our small isolated world. If things are hard, we need to have the confidence to let people know. Let those that can relate, give you their love and support. If there is joy, share it and let people rejoice in your moment of happiness, the chances are it will also lift them. We need to ignore those who can only find words that belittle or criticise, that show their ignorance or lack of empathy, because those words pull you further down and make you afraid to speak openly next time. I'm not implying, that everything a person feels or experiences needs to be shared, or validated for that matter. We don't need permission to feel the way we feel or to express it online. But perhaps at times, we do need to know that there are people who share our experience or that there's a virtual hug or a few words of comfort to help the moment pass.

The tragic loss of another TN Sister has shaken so many. There is so much sadness and heartache in our TN Family today. In the midst of this devastating news, I not only feel immense sadness, I also feel grateful. I am surrounded by people, in a virtual world, who would support me, love me, comfort me, laugh with me, hug me, yell at me and check up on me, because they understand me and have very similar daily experiences themselves. I know how lucky this makes me and I don't believe I take any of my TN Family for granted.

One thing that does and that will always make me sad, is not just the ever growing number of TN Brothers and Sisters that are joining our Family, but my inability to tell everyone of them that I genuinely care. If I had the time and if my memory didn't let me down so often, I would make it my mission to have personal contact with every single one. Sadly, that's impossible and I forget so many details these days. I blame the ridiculous amount of medication and the fact that someone's messed around with my brain!

             

                                                 Image by Nikki Samuel

Where It Started...

When I started this blog it was a really personal journey towards making a huge decision. I had to decide if having an MVD was the right way forward for me and my family. I decided, even at the beginning that the blog was about hope. I had so much hope that surgery was the only way forward, I hoped and believed that ANY degree of pain relief was worth the long and complicated surgery and that I would have a new quality of life to enjoy and share with my loved ones.

Despite the huge disaster of my surgery and everything the experience stole from me, I believe I have continued (on the whole) to focus on the word HOPE. I know that there is no surgical option for me, perhaps changes in medication might help, but I now focus on the hope that awareness, education and research can bring to the thousands in a similar position to me. The TNnME campaign to raise awareness has become huge and it seems the 2nd International Awareness Day is going to be bigger and better than the first. I will, like last year, have my place in the UK arm of TNnME and awareness and fund raising for The Facing Facial Pain Research Foundation.

Until then, the word I still wish to be associated with, even after all the disasters that have happened to me personally, is the word HOPE. It is said, that, 'The person who has hope, has everything', (unknown).

There is a lot more happening in the world of TN than just a few years ago and that gives us all hope for the future.

                                 
                                                   Images by Nikki Samuel