Turning points and reflections

There have been some pretty huge turning points along this journey. And then there have been the slow improvements that you don’t always notice until you reflect a bit.

This week I’ve been reflecting a bit. Mainly following the news about my neurologist being under investigation. Which is still something of a weird one for me..... But as I said in a previous update, Dr Watt didn’t diagnose me. I’m one of the fortunate ones in that I’m confident my diagnosis is correct and have the medical records and scans etc to prove it. Plus I’m still alive! If it’s true that he’s made mistakes, then it’s awful for a lot of patients and families, but the reality is that it doesn’t change my outcomes. He was my neurologist when I was originally prescribed the drug that poisoned and almost killed me....... but remember that I took that drug for almost a year before the toxicity built up so much my body couldn’t take it any more. I was under the care of a different neurologist from July 2017, and an oncology team the entire time. So even if Dr Watt messed up..... he wasn’t the only one. They must’ve known he was being investigated and yet, even when I became critically ill in January 2018, they offered no ideas to the Causeway team. My local consultant and Macmillan doctor and nurse figured out what was going on and saved my life. Part of me finds that terrifying, but mostly I’m just really grateful. I will continue with my complaint because I know how important it is. My voice will be a small one now, compared to others who’ll unfortunately have a much worse story to tell. My heart goes out to families who’ve lost someone. I won’t dwell on what I believe to ultimately be a systematic failure, combined with some sheer incompetence and lack of care. Nor will I back down without some explanations and reassurances......

Moving forwards, I continue on my journey to stop taking steroids. It’s unpleasant, but I’m pushing through. My side effects continue to be insomnia, chronic indigestion (due to the huge amount of food I eat!), joint and muscle pain, tiredness, some difficulties concentrating, and some emotional dips.  I’m managing these side effects by getting strict with myself over food and diet, gently trying to walk through the pains, but I’m not pressuring myself and I am happy to take time to sit down and relax as needed. I’m trying not to be hard on myself if I forget things or do something silly. I am going at a very slow pace and being greatly supported in this by hubby, sister, son, Dad and friends. 

This morning I enjoyed breakfast with a good friend, and then cleaned the house. Now I’m looking forward to a quiet afternoon of sorting out ‘stuff’! Last minute wedding plan checks etc. 

Then I have a weekend with my sister visiting. Before time with my in-laws to celebrate a birthday, and then a Bank Holiday visit to see friends at their beautiful garden with hubby.  My Wind in the Willows...... live! 

So things are good. I’m good. I’m sitting in my sunroom/living room, watching the blackbirds that sing to me every sunny day, gathering grass etc to make a nest. Not a bad way to spend some time. 

Living life. Keeping my priorities right. Moving forwards xx