2013 is certainly a new beginning , but I feel that I have to (firmly) close the door on 2012 before I start blogging in earnest. Just before Christmas I realised that I had given up and what was more frightening, it happened so gradually that I was totally unaware.
Earlier in the year, it was confirmed that the shingles virus had been leaking out of me causing more nerve damage than anyone had imagined. What’s more, not only do I have little control over it, but the doctors don’t know how they can help. The Big Bad of my nightmares was real and knowing that there wasn’t much I could do, I fell into my old behaviour pattern of believing that if I followed the rules, took the pills and was a good patient, that I might be given a break. Of course, that rarely happens.
I did my best to accept the new diagnosis head on. As I was struggling with the new nerve damage in my face, I increased the gabapentin hoping that if I accepted it and the side effects, it would be easier. What I didn’t understand was how the side effects would change me. The weight gain and pins and needles in my extremities I could deal with, but the low mood and brain fog was harder – the tablets aren’t nicknamed Morontin for nothing! I had read books, but I couldn’t tell you the titles, let alone the plots. I also didn’t realise the impact on my family. My thoughts were a jumbled mess; it was so hard to get a train of thought or my opinion across clearly and this frustrated them – and the more frustrated they got, the more upset and angry I got because I couldn’t get them to understand me. They tuned me out and I shut down and hid. It was frightening that I couldn’t make myself understood, I felt stupid and confused – I was angry with myself and everyone else. What was wrong with me? I was doing all the things I should do, I was accepting my illness and taking the pills like a good girl, so why did it feel like I was being punished?
For months I had a permanent headache and heart burn; I was trying to explain why I was feeling so awful, but nobody heard me. I was losing control of the pain and the medication didn’t seem to be working, and there are no alternatives to try. I felt such a burden to those I loved. I could see no future, just more pain and I started to think about how nice it would be for it all to end.
It all came to a head in December, despite me telling them, my family didn’t realise that I had increased the tablets and I didn’t realise that I was resembling a zombie. Once we had talked, I knew that the only option I had was to reduce the gabapentin back to my old levels and see what happens.
That was a month ago and I am down 200mg. It has been incredibly hard. Even though it was a small difference, the increase in pain hit me hard and I am still getting used to it. I do feel more alert. I can remember the books I have read and more importantly, my family have seen a positive difference. I can’t say that the future feels better or that I am not scared of what my body will do next – because I am, but I feel like I have bit of ‘me’ back. The price is more pain. It is a constant balancing act, how much pain can I live with vs the impact of the side effects. All in all, I am glad to see the back of 2012.