I should probably let you all know I’m still alive – I know my posts showed I was in a dark place and then going MIA isn’t great. But I’m here and in a slightly better place mentally.
Wednesday I had reprogramming. I now have two programmes – one in the background of my head (root of the nerve) and one on the side (to cover nerve branches). I have to stick at the current settings for 3 weeks. If then I still don’t feel an improvement I can switch to every 3 minutes. If I then get overstimulation pain I can turn back to every 6 minutes until it settles. On worst days I can also turn to the continuous programme for a few hours in the morning – I’ve done this a couple of times since and it has helped a little! I asked if it was normal to switch between programmes and was advised that they have a patient with a day programme, night programme and a programme for when they are in public. So basically there’s a lot more we can try but I have to trust the trial and error process. It didn’t stop working because of the cutting out (that’s a normal due to nerves moving with the head and therefore not having full contact at all times). It stopped either because my body got used to the stimulation or it decided it was too much stimulation. So I’m trying to trust the process, even though I’ve still been confined to bed since. My pain is more steady with both programmes, still too high, but less additional stabby pains. So I guess it’s not all bad!
My greatest news is that I have finally reached my savings goal and yesterday I ordered myself a new bed. One that I’ll hopefully find easier to get in and out of, one I’ll be able to change the bedding myself on, but also one that’s an ottoman so I can hide some clutter from my room and make it homely and comfortable. Cause it feels like I’m living in a car boot sale stand right now.
I don’t really think there’s much else to report on so I won’t bother waffling. But I didn’t want to tell you about a book I read by a friend, Caroline. Also V injured, she has achieved many things in her life, including being the co-founder of UKCVFamily the group I volunteer for. One of her other achievements was her efforts in supporting the peninsula that was devastated after the 2011 tsunami in Japan. At the time she was living in Japan herself. She wrote a book about it called One Month In Tohoku. It was incredibly inspiring and was really what helped raise me from the dark place I have been in. Well worth a read if you’re interested in hearing about the spirit of the people who were impacted and all Caroline managed to do to help them and truly become one of their community. I’m incredibly proud to know her and be a part of the group she has contributed towards and continues to fight for. A truly inspiring lady!
So anyway that really is all I’ve got now. I’m grateful for all who have checked in, and I will get back to you when I have a bit more energy! For now I will continue to rest and continue my quest to find more treatment options that may be worth trying and how I can fund them 🤍