'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.
