Just a little update for all of you kind friends, I know it is somewhat overdue!
I had hoped that by this time I would have had my long awaited appointment in the States and would be writing to let you all know how it went. Unfortunately, due to a combination of the doctor changing premises, illness and even the very bad weather over winter, my wait continues. No date in the foreseeable future and I have been on the waiting list for 13 months.
Despite this set back my wellness team (now consisting of an endocrinologist, nephrologist, cardiologist, nutritionist, acupuncturist, GP and USA Lyme Doc - via Skype) continues to help me make improvements.
I'm much more mobile and have less days flat on my back in pain. The good days way outweigh the bad days. Good days can involve 4-5 hours in the morning when I can feel pretty good, walk Matty, do light household chores and catch up with friends/family. I still need to rest for several hours in the afternoons but tend to rally for a few hours in the evening too. Bad days, well, you can probably imagine :-( To give you an idea having a shower requires the rest of the day in bed to recover. Gives a whole new meaning to patience!!!
I have been so much improved that Nic and I even risked a week away together - our first one ever on our own. Luckily Nic is very used to carrying everything and looking after me so not only did I manage, but I felt pretty good for 5 out of the 7 days - fantastic!
Most of the money you helped raise (about £8000) remains safely tucked away for our appointment in the States when it happens. The rest has paid for my on going medications and appointments so far, without which I wouldn't be sat here writing this! So I send you all my thanks again, and gratitude. I'll keep you posted.....
