Expectation

Health and well-being are very precious things. When you're fit and healthy, it isn't often that you wonder what it would be like if you suddenly woke up seriously ill, disabled or with severe chronic pain. When I was running around, working as a Senior Staff Nurse in charge of a busy acute renal ward, answering the hospital bleep and dealing with constant phone calls and, not least, taking care of my patients, I often felt lucky to be living a full life and for being well. People would talk to me about their experiences and I realised, many times, that life was incredibly precious and fragile. Nevertheless, most of the time I lived my life taking everything I had for granted, as a lot of people do.

Since my facial pain started in 2005 I've appreciated life even more. My life is no longer full and I don't remember the last time I had a sense of well-being. In fact my life is entirely predictable. Each day consists of the same things, the only variation being when I sleep or how much my pain is affecting my ability to function. If I'm awake all night I tend to sleep the following day when my body reaches a point where sleep is the only option. If I do sleep at night, it is never enough and I will always have an afternoon nap. The impact on my family and on my life with them is enormous. There are days when I hardly see Harry at all and other days when I'm with him, but the only energy I have to give is conversation or short games on the Wii. I look at him and feel such a sense of loss. I always knew what kind of Mummy I would be, playful, spontaneous and fun but with a firm set of ground rules. Perhaps I was looking at parenting through rose tinted glasses but the reality of being a Mum is far, far removed from everything I expected it to be.

Harry's arrival into this world was an induced labour at 38 weeks because I was suicidal. Being pregnant meant I couldn't take any medication for the pain and I had spent almost 15 weeks in bed in severe pain. Although everything about the pregnancy had gone smoothly I was denied the chance to enjoy it. I loved being pregnant, I was proud of my baby bump and yet the constant pain became too much for me to bear. I was desperate to give birth, not so I could hold my precious new born baby, but so I could be given medication to treat the pain. Once Harry had arrived, I expected the medication to cure the pain and I would return to my normal self. I'm so very thankful that I had no idea how it would really turn out.

Surround-Sound

I've experienced the 'surround-sound' idea of hope several times during my life. Waiting for exam results, graduating as a nurse and interviews for jobs. In 2005 I think my sense of hope was at its greatest. Hoping that I might conceive and that I might have my own child was huge. My hopes for Motherhood!! In May 2005 we were sitting in a local bar in Fuerteventura talking about our 'plans' for our return to England. I remember the evening so well, because I felt like it was a dream and I was desperately hoping it would become a reality.


I didn't have to wait too long before there was wonderful news to share with our families. Pregnant - and after our very first 'try'! It was the most amazing feeling in the world.


Only a few weeks into the pregnancy we had some devastating news, Nan was dying. I did manage to tell her our news and she had a picture of our first scan next to her bed. Seeing Nan deteriorate and watching her fade away was horrendous. There were blessings, she was able to leave hospital and my Mum, in her wonderful way, took perfect care of her. I felt so guilty at this time because I was unable to help as much as I would have wanted. I did small things, but nothing close to level of care I would have liked to have given. Nan died 1 hour after my birthday ended in September. Losing her from our lives was totally devastating. However, we had every reason to be strong because there was a new life to look forward too.


Just a few weeks after losing Nan I found out my Dad was dying. We weren't close, but nevertheless it was very sad news. While he battled against terminal cancer his main goal was to see his first Grandchild. 


In October we went for the detail scan which showed a healthy baby boy! The news was perfect and I remember, so clearly, how much it lifted everyone's spirits. Mum was daring herself to be excited, despite coping with the loss of her Mum and my Dad had convinced his Consultant to give him chemotherapy in an attempt to make him live a little longer.


It was a couple of days later, that I felt a pain in the left side of my face.


That was October 2005 and here we are in January 2012. Perhaps none of the above is relevant to where I am now, but it is important to me to reflect on how much hope I felt that year and to look at the sequence of events that happened prior to the day this pain started. I am surprised that after all that has happened, that I still have hope, but obviously I do, or I wouldn't be writing this.

Hope

'When the world says, 'Give up' - Hope whispers, 'Try it one more time' - Anonymous

I always liked the idea that hope was a quiet voice that only you could hear. This thought usually came to me during the low times in life. I suspect, like most people, hope was a completely different idea or concept when things were going well. Instead of it being a whisper, it would probably be in surround-sound that was impossible to ignore. At those times it would be seen as a great incentive, achievement or even certainty about the future. Hope is the one thing that motivates us to carry on when we feel defeated and to never give up when life is particularly challenging.


It may take a while for me to write what I need to say, but, I need to make a very big decision, probably the hardest decision I have made in my life so far and one that could change my life forever. For this reason, I want to look closely at what is happening in my life right now and revisit some significant times from the past 7 years. Only then, if I listen hard enough, am I likely to hear the whispers of hope that will enable me to make my decision.