Over the last week I have been living in a fog. Going through the motions of life because I have to, not because I want to.
I found out prematurely the results of the MRI scan of my knee. There is a 23cm thickening in my sciatic nerve (in my thigh) along with 2 tumours. It took a week (of pulling my hair out, consulting Doctor Google and driving everyone crazy) to finally get hold of the specialist to see what that meant. The specialist still believes that the pain in my knee is coming from my back not the tumours that were on the MRI. There is a risk of permanent damage to my leg if they were to be removed. Her solution to the pain was to double the dose of medication that I am on, something that I am reluctant to do. I hate the way my head is unusually fuzzy, I find it hard to concentrate and my memory is terrible.
I'm frustrated with life at the moment. Almost 12 months on from the operation and my back is finally feeling good. I have put so much effort into making sure I keep up with the excercises, gong to the pool and Pilates. I have learnt to put up with the leg pain because in my head with all the strengthening excercises I have been doing I saw an end to it. Now it has been confirmed that there is no end no matter how hard I try. The pain will always be with me. The restlessness at night in bed, moving my leg from side to side, heat packs anything to try and get some relief.
I know that this is the nature of NF. It sucks.
I have had so much thrown at me in life that I have always managed to get through. There was always an end. With NF there is no end. This is my life.
I have had a week of feeling sorry for myself now it's time to try and pick myself up. Get that fighting spirit back. I have booked a trip to America in September now that is something to fight for. My first overseas trip. I will also be ticking off a bucket list item, hearing a gospel choir. When I am feeling down and sorry for myself my trip is something that I need to try and focus on.