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